Celiacs -- What were/are your symptoms?

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Jul 30, 2009.

  1. Shananegans

    Shananegans New Member

    I am starting this post to help those who may be trying to figure out if they in fact have Celiac disease or gluten intolerance either apart from or on top of their existing CFS/FMS. I have noticed many people have been curious and are now trying to follow a gluten free diet to see if that may be their issue (or one of their issues).

    My symptoms completely mocked those symptoms of FMS including exhaustion, full body pain, joint pain, restless legs, digestive issues that I won't go into detail about (your welcome), muscle cramping and strain, flu like feeling, vomiting, and did I mention exhaustion? (I would eat something and literally pass out within 10 to 15 minutes after until I found out it was the gluten).

    There are more but it is late here and I can't think straight.

    So if you wouldn't mind taking the time, please list your symptoms and maybe even how you cope.

    Anything would be appreciated by many!

  2. cfsgeorge

    cfsgeorge New Member

    I want to ask you a few things that may help us to differentiate celiac from CFS and FM.

    First, did you have the minimum 11/18 tenderpoints which is the key diagnostic criteria for FM?? I can't believe how many people are diaganosed with FM w/o the minimum 11/18 tenderpoints. those doctors are complete idiots! pain does not equal FM!!!

    Second, did you have BOTH mental and physical fatigue, PEM, unrefreshing sleep, cognitive problems(short term memory loss, brain fog, concentration, etc), and automonic problems of NMH or OI? I beileve these are the key symptoms of CFS/ME(Canadian Guidelines) that can differentiate it from other CFS like diseases(ie: celiac, hypothyroidism, lyme, etc).

    Third, how did you get diagnosed with celiac? Was there an accepted blood or allergy test for gluten?

    I have CFS but more closer to ME and i have all the symptoms listed above #2 and much more. The only symptom i have in common with your celiac is the exhaustion which is both mental and physical for me. i do not have any pains nor any digestive issues. i do have horrible nausea almost 24/7, but not vomiting.

    Thanks for your post and help!
  3. Shananegans

    Shananegans New Member

    I had all 18 tender points and they were absolutely terrible. Most of the time you couldn't even touch me to hug me I hurt so bad at the tender points as well as all over.

    I did have both the mental and physical fatigue, I couldn't concentrate on anything and it was impossible to do too many things at once (something I was previously excellent at). I also had the cognitive problems and the brain fog, loss of concentration, etc. I was never diagnosed with autonomic issues but my BP has always been on the low end of normal and I would have fainting spells when standing. I was also constantly dizzy and would lose focus very quickly, my vision has quirks where sometimes I need my glasses and sometimes I don't. The pain I had was the major diagnosing factor for my doctor to call it FMS and then later mixed with CFS, restless leg syndrome and migraines. The migraines I still get on occasion.

    There are a few tests for Celiac. There are blood tests ANTI-TTG ANTIBODIES, IGA, TOTAL IGA, ANTI-TTG ANTIBODIES, IGG, ANTI-GLIADIN ANTIBODIES (AGA), IGG. But of course there are problems with the blood tests and they are very unreliable because 1. you have to still be consuming gluten fro them to show positive and 2. even then they could be wrong.

    There is also genetic testing where they test your DNA for certain factors, this is supposedly the most certain and it can show whether you are Celiac or just at least gluten intolerant.

    And then there is the biopsy of the small intestine where they biopsy a small portion to look at damage to the villi of the small intestine. If the villi are flat or even smoothed off, they diagnose with Celiac.

    I had the genetic testing, it is expensive and most doctors do not like to do it unless absolutely necessary but they didn't have much of a choice with me since I had stopped eating gluten previous to approaching doctors since I found the information out on my own and I don't much care for doctors anyways. :)

    Celiac is also hereditary, usually if you have it so does one of your parents and possibly your siblings or your children (this does not always happen but they have found more often then not it's a family thing). My mom is being tested for it soon as she has all of the same symptoms I had.

    I am not 100% healed. I still have issues we are dealing with but I am finding now that they all seem to have their own answers rather than just being shoved under one umbrella. I am 80% improved, no more exhaustion, no more confusion and most importantly no more pain, tender points are gone and I can finally function again.

    Sorry this is so long, just wanted to be thorough. And if there is anything I didn't answer or any other questions, please, please feel free to ask.

  4. later, when I am feeling better-

    I think it would/will/can be just as helpful, to tell people *which* symptoms got better, once a completely gluten free diet was followed..

    I mean, if someone suspects they may have CD, or intolerances, they will/would never KNOW what was what, without having done the strict diet for months... I'd never be able to say "I have Celiac's disease, and here's my CD symptoms _____ and here's my fibro symptoms ______ (and all my other illnesses!)

    (and for me, my diet was FAR, FAR more than Gluten Free- it was also casein(dairy protein) free, additives, preservatives, seasonings, were also exculded,

    as well as 'estrogen dominant foods', gassy foods, etc- (broccoli, for ex.) in order to address hormonal imbalances that were suspected (and later proven), and to allow my digestive system to *heal* first, as well as addressing any allergy issues..

    Some here may or may not remember previous posts from me, where I had posted about eating:

    boneless, skinless chicken breasts (we stuck to the one/only brand we could find that did not say this somewhere on the packaging:
    "may be injected with up to 15% _____ (msg, etc)" & brown rice, those two things alone, were probably 80+ % of my diet,

    then brussel sprouts, quinoa, puffed rice cereal, rice milk, and some very specific fruits were all I ate for 3 mos

    But, anyhow... here are symptoms that are very very wide ranged, that all improved- most WENT AWAY, on the diet:

    1. ANY form of gas, (bloating, belching, passing gas, gas pain, even no hiccups- though, oddly enough- I developed severe, frequent hiccups the first 1-2 wks of the diet- which baffled my dietician, since, again- all I ate was chicken, & brown rice... (with the above mentioned things thrown in, once in a while)

    2. Pelvic pain from an ovarian cyst(s) I have had pelvic pain since I was 16/17 years old. Pretty much every day- I could not believe I actually did not have pain- or near as much, sharp jabbing pain...

    (I later was diagnosed not only with Endometriosis, which explained such widespread pain, (even where I would NOT have imagined *gynecological* issues would have interfered.. also diagnosed with PCOS later as well, and had surgery on that cyst, which was there for over 7yrs, due to some careless, neglectful, 'wait & see' doctors, which, of course I fired..)

    3. IBS

    4. Bladder spasms, (which I was diagnosed with months earlier, after cystoscopy, & put on "Detrol LA- which I quit after 1 month due to ineffectiveness)

    5. MY PANCREAS ATTACKS- which I have suffered *tremendously* with, since my gallbladder removal and continue to now, (will be 9 yrs, come October. yes, they STOPPED, on that diet- but, it was a strict, strict, way to eat- still worth it, and I plan to pray very hard to God, to help me get back to it 100%)

    6. My hair looked better than it had in years! I used to have gorgeous, thick, shiny hair,at *26 yrs old*(I am now 31) I was diagnosed with "MALE pattern baldness!!!!" (I'm a woman, OUCH!)

    7. PMS/My periods, were not living hell (sweating, vomiting, - other horrid stuff, not every month- but, always crippling pain) not on that diet though... they were quite bearable, I believe...

    8. Acne- which I thought was due to hormonal imbalance, (probably was/is) medications, heredity, bad luck, karma, who knows- my skin was 100% blemish free- and the only time IN MY LIFE, that I did not have *extremely* excessive oily skin.

    If I think of others, I will post again- (headaches- I believe those were reduced as well. No vomiting either- after I got thru "Herxing" and I DID, days 11-14, I vomited, quite badly... but, after that, not again.

    Anyhow, that's a start for people...

    ETA- My blood sugar did not drop on me constantly, suddenly & unexpectedly, now... I did not monitor my blood sugar (I was keeping my glucometer with my mother, who IS diabetic, a lot trying to get HER to monitor hers,) I just know that I was not getting suddenly weak, jittery, irritable, sweaty, etc...

    I did still have pain, and think I will always have fatigue.. My weight did stabilize 126lbs, for the first time since I had gotten sick (either up because of anti-convulsants/steroids, or underweight due to vomiting, malabsorption, medications, what-have-you..)

    I wish I could remember anything in terms of sleep- better, worse, same.. but, I can't.. Insomnia is worse & worse for me, lately.. the last 2 yrs or so, with melatonin, having worked faithfully, at a low dose, now not being so effective, sometimes not even close.

    [This Message was Edited on 07/31/2009]
  5. cfsgeorge

    cfsgeorge New Member

    Your post is excellent and not too long for me.

    As a former health care professional, I am shocked to hear that Celiac disease shares the SAME 18/18 tenderpoints that is so UNIQUE to FM. From your symtoms list, Celiac disease and FM are indistingushable w/o the proper blood tests for FM and Celiac.

    I need your help to see if we can differentiate CFS/ME from Celiac just from the key or hallmark symptoms. Did you or do you know if Celiacs have PEM/DPEM from trivial physical AND mental activity? Did you have sleep problems namely insomia and unrefreshing sleep? These are hallmark symptoms of CFS/ME when appearing TOGETHER.

    Do you know what are the key or hallmark physical symptoms of Celiac? I'm guessing it must have major digestive and allergic issues? What major symptoms must you have to justify being tested for Celiac disease?
  6. cfsgeorge

    cfsgeorge New Member

    Do you have CFS/ME, FM or Celiac disease? I share none of your symtoms listed 1-8.
  7. zeowa

    zeowa New Member

    First of all: Is there a way to view the last 10 posts or something like that when you post a reply?

    Very interesting, wish I could see what I just read, much of it rings true. I feel like I don't have a good understanding of celiac, gluten intolerance, etc.

    I share the symptoms mentioned above (1st post I think) where (and this is a good 10 yrs before getting CFS) I would literally almost pass out after eating, and I would be exhausted at strange times and experienced RLS. I paid little attention to any of these symptoms, I was still a teenager living at home with no access to a doctor, let alone a good one.

    aintasgoodasioncewas: I'm really interested in your list of symptoms because I have been told I likely have endometriosis (but do not want to undergo laparoscopy), have had a series of ovarian cysts that rupture (some very painfully, some not as badly). I have recently changed my diet to probably 1/2 vegetables (kale, broccoli, beets, chard, carrots, cabbage, etc. etc.) partially because I'd been having a number of digestion-related symptoms like hiccuping (I was just wondering about this last night as it struck again while I was trying to go to sleep), extreme bloating (6" around my waist, only 3 lbs. gained in the last 6 months), but nothing unpleasant in the realm of evacuating. I also have very painful pms and associated symptoms.

    I was tested for celiac (blood test) when I first got CFS, and it was negative. I just saw my PCP yesterday and asked about hormone testing, another type of celiac test (assuming she would know more), and she isn't sure of what to order and wants me to talk it over with my naturopath. I want some definitive results! I'm sick of being told to "assume it might be a problem and just change ___ behavior..." Any answer about the details of what is not functioning properly in me would be very welcome by me.

    cfsgeorge-Will you say what you used to do in the healthcare profession--just curious? I have the combination of quite severe PEF/PEM and unrefreshing sleep. Are you diagnosed with FM and CFS(insert your preferred name here!)? I have never even let myself consider being diagnosed with FM, but I know that I have it--I'm just always most bothered by the protracted fevers or inability to get up.

    What tests are best for hormones, celiac, gluten? I need to know what to ask for. I'm shocked every day that I'm on these boards at how ignorant my healthcare professionals are compared to this population...shocked.

    ETA: Almost forgot the last 6-8 months have included severe tension headaches and--my least manageable symptom of all right now--PLMD (periodic limb movement disorder) up to 100 times a night and sometimes more. I'm very interested to finding out if gluten could be involved.[This Message was Edited on 07/30/2009]
  8. cfsgeorge

    cfsgeorge New Member

    My name is George and i am a Chiropractic physician with multiple professional degrees. In addition to treating the musculoskeletal system, i was very much into preventative medicine, nutrition, supplementation, exercise, and rehab therapies. I was part of a complementary clinic with chiropractors, md's, acupuncturist, chinese herbalist, and massage therapists.

    I lived my adult life very very healthy as a total health nut and fitness freak. I was your classic type A perfectionist. For those who think CFS/ME is due to poor nutrition, poor lifestyle or lack of exercise is completely wrong. I'm not just speaking from personal experience but from other PWC and epidemiological studies that says CFS/ME affects mainly HEALTHY people not unhealthy people with poor lifestyles. There is still something "huge" missing with CFS/ME.
  9. hugs4evry1

    hugs4evry1 New Member

    Hubby was just finally dx'd with a gluten allergy although our German specialist said he can't dx as having celiac disease....

    About 4 years ago (when I was too sick to notice) he tested pos for both Lyme and EBV. Completely healthy adult male, athlete and sharp as a tack.

    Symptoms of fatigue, brain fog, lethargy etc....started showing up and I've always wondered when they would dx him with Fibro.

    I'm the one who noticed the possibility of Restless Leg Syndrome and he began medications for that. (This was recently agreed upon with his Neurologist as well)

    We thought at one point that he may have to go on disability so I found a book on natural Lyme protocols and had him on that for almost a year. He did much better and some of his old self came back.

    Fast forward to last year when our daughter was re-hospitalized in a mental hospital in London (we both went downhill from the stress of that one) and her moving in with us after wards.

    We had both tested for low iron stores (almost non existant iron stores) and while doing research on this (mostly for me) I happened upon studies that show that people with RLS and low Iron stores almost always test positive for Celiac Disease.

    Light bulbs went off everywhere....he was running to the bathroom constantly. Vomiting too, he even had to use his trash can at work, couldn't make it to the men's room. I put him on 3 Immodiums a morning with his pills yet it didn't even help.

    The German gastro specialist tested his blood, stool, ultrasound on abdomen and an endoscopy with biopsy too. Gluten allergy is the only thing that showed up so.....

    Hopefully now we can concentrate for a bit on finding the hidden glutens, it's not just bread, crackers and wheat products.....even shredded cheeses use gluten powders to keep the cheese from lumping together!


  10. xchocoholic

    xchocoholic New Member

    So far my ataxia is completely gone but I get myoclonus and insomnia again if I eat any gluten whatsoever. I'm just super sensitive so minute amounts nail me.

    The conversation about what is celiac and what's CFS / FM is discouraging. IMHO, it's obvious that if a person has blunt villi or leaky gut from celiac disease then nutrients will not be absorbed which can lead to any condition or mutliple conditions listed as a result of missing the proper nutrients.

    The NIH has a list of nutritional deficiencies and how they affect our bodies. Many nutrients are needed for multiple functions or they need to work in unison to perform a single function or support certain organs. But you don't have to test positive for celiac disease to have a leaky gut or have a problem absorbing or utilizing nutrients.

    IMHO, The current method of diagnosing and treating a patient based on symptoms alone is ridiculous since this completely ignores the root cause. We will never find a "cure" for CFS if this approach doesn't change. Meanwhile, many of us have found or are looking for the root causes of our CFS and improving. Some quicker than others but steady progress is better than no progress ... Too bad we have to do this on our own ... Marcia
  11. Rafiki

    Rafiki New Member


  12. zeowa

    zeowa New Member

    Thanks for sharing that. Did you find your former coworkers supportive of your dx? I agree that the consensus seems to be that it's quite a healthy and motivated population that CFS/ME descends upon. I did not get sick until after moving to the west coast, where I've found the fitness-freak mentality such the norm that anyone who can't be quite as physically active is seen as automatically depressed. I still recall the first few months of my illness, hiking with a fever, week after week, thinking my body would either have to 'get over it' or I'd just drop.
  13. Here is a brief (I will try) rundown & timeline of my diagnosis' (as pertains to this conversation- ALL of them, are far too long, and then also become 'the chicken or the egg' question)...

    10/2000 diagnosed at IU Medical Center-Rheumatology with FMS, (primary doctor- a D.O. 'suspected',FMS. but, she liked to play what I call the "not it" game- doctors will concur with diagnosis', or argue it, but, I've been *amazed* at the amount of *specialists* even, that don't seem to want to be 'the one' that writes DOWN a dx.. which does me a favor, re: insurance (LOL)..

    1/2001 diagnosed with Chronic Fatigue Syndrome

    3/2002 (or 03, I'd have to look, actually) my primary care doctor ordered an MRI- believe it or not, because of all people the *disability doctor* asked me if I'd ever had one- he did not elaborate why he asked, only asked me- so she ordered one, I was 24, sick for one year (ok, so it *was* March 2002)

    it came back with some lesions, specifically I guess of importance was the 7mm lesion in the corpus callosum... the report read:

    "due to the patient's age, and lesion location, Multiple Sclerosis should be considered"...

    I've been diagnosed, over & over with MS (neurologist in Naples Florida, neurosurgeons (x's 3, radiation oncologist- those all treated my trigeminal neuralgia, except neuro in florida).. anyhow..

    I was tested by an Integrative Medicine Doctor for heavy metal toxicity also, late in 05' and had mercury/bismuth toxicity..

    I was dx'd with Celiac's disease, in late 2003, or 2004, after my scopes, - per the biopsy results, which is said to be 'the gold standard' and Celiac literature says that few labs, especially in the US are 'equipped' and knowledgeable in the proper labwork/testing for celiac's.

    When I was in Naples, Fla... that neurologist ordered one of the 'standard' blood tests for Celiac's... AgA (anti-gliadin antibodies- I believe... I'm sure you know what I mean if I'm not 100% on the spelling)

    That, on me, was 'normal', but, my dietician, and gastroenterologist said those tests don't really trump *biopsies* which show 'villous atrophy' (not quoting of course, but, they are saying bloodtests, again, here, especially, are not very reliable)

    I think this post is long enough, but, if you have any questions I may be of help with again... please let me know.

    I wanted to also mention- I will try to find you all the *actual* links, but, I have read that SOME (possibly genetically/chemically predisposed?) people who do not follow a strict Gluten-Free diet.... basically, that lifelong untreated Celiac's can even cause SCHIZOPHRENIA-

    It says we are at '44 x's' the risk of this cancer, X amount times more at risk for that cancer, (there are several)... but, the schizophrenia scared the chit out of me...

    I'll try to add whatever I can, if interested, to shanenegans thread, if needed, or wanted.

    BTW- I see you were a chiro- now, my PT does not like them, my entire in-law family go to one regularly, and.. I can only say..

    While, adjustments HURT me.. the one chiro I did see... also did alternative stuff, and (daggone it, what's the studies/practice of feeling 'points' on a person's scalp, hands, other areas, & see which 'markers' for certain 'organs' are ill?) anyhow- he did that... I thought it was quackery, but, did like the man, as a person, and he was a pray-er, who couldn't use prayers? :)

    As years went on in my illness... he was DEAD ON, in those assessments, which.... didn't make my mom a believer- but, she was pretty amazed... (he knew my gallbladder & pancreas were 'off' at least.. by those 'points'.. gallbladder had the most, pancreas & liver, just 1 lower than gallbladder, then spleen had 1 or 2 markers, or indicators.. so far spleen's fine, & liver.. other than enzymes elevating mildly from time to time, also Ok.. but, gallbladder came out, shortly after seeing him, and my pancreas--- it is a hugely complicated story.) Just wanted to share that.

  14. Shananegans

    Shananegans New Member

    Thank you so very very much for the information you have shared. Your story sounds so close to mine it's almost scary. I will post more later as I think of it but I at least wanted to thank you for your information as it will be helpful for everyone, most of all me.

  15. Shananegans

    Shananegans New Member

    I am unsure about how many others have had it happen where they have the tender points showing in Celiac, that would be a number I would love to get my hands on! :) And it's the main thing that frightens me about the FM diagnosis, to elaborate I mean: They use tender points to diagnose a syndrome that has no set information about anything and I am only speaking strictly of FM, NOT of CFS/ME. I am a true believer that they are completely different diagnoses and short of exhaustion and pain, they have nothing in common.

    On to Celiac and FM being indistinguishable from one another short of there being blood test available for Celiac, in that you are correct in that assumption, for some people you wouldn't be able to tell them apart. As with FM, there are no 2 cases of Celiac that are exactly the same and for some, they never have symptoms and usually it is discovered when they were looking for something else completely.

    Insomnia and/or unrefreshing sleep is common amongst Celiacs from what I have read in other forums mostly due to malnutrition from what I understand. I do have insomnia and unrefreshing sleep. But I have had the insomnia for most of my life and many people in my family also have it and I attribute the unrefreshing sleep to slight sleep apnea which I was diagnosed with in 2005.

    It is hard to separate Celiac from a lot of medical issues because the one thing Celiac causes is severe malnutrition which reeks havoc on a body so truly it's no surprise that it's just been recent that it is finally get attention in the US.

    Please elaborate on the PEM/DPEM as I'm not sure what those acronyms stand for.


    ETA: I am going to work on a timeline of dx/better list of symptoms to add to this as soon as I have better focus on the topic.

    I am copying and pasting a list of the main symptoms found from a wonderful Celiac website, Celiac.com, it's'a forum created by a Celiac for Celiacs and it has an amazing amount of information:

    Celiac Disease Symptoms
    Celiac.com 02/08/2007 - There are no signs or symptoms typical for all people with celiac disease. Signs and symptoms and can vary greatly from person to person.

    People with celiac disease often have general gastric complaints, such as intermittent diarrhea, abdominal pain and bloating. Some people with celiac disease, however, suffer no gastrointestinal discomfort at all.

    To make matters of diagnosing celiac disease even more challenging, celiac symptoms can also mimic symptoms of other conditions, such as anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions.

    It is not uncommon for celiac disease to present itself with symptoms that are far more vague. Such symptoms can include: dental and bone disorders (such as osteoporosis), depression, irritability, joint pain, mouth sores, muscle cramps, skin rash, stomach discomfort, and even tingling in the legs and feet (neuropathy).

    Celiac disease results in malabsorption of nutrients.

    Depending on the degree of malabsorption, the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms:

    Signs and Symptoms of Malabsorption, Malnutrition, Vitamin and/or Mineral Deficiencies Associated with Celiac Disease:
    Abdominal cramps, gas and bloating
    Borborygmi (stomach rumbling)
    Coetaneous bleeding
    Easy bruising
    Epitasis (nose bleeding)
    Failure to thrive
    Fatigue or general weakness
    Fluid retention
    Foul-smelling or grayish stools that are often fatty or oily
    Gastrointestinal symptoms
    Gastrointestinal hemorrhage
    Hematuria (red urine)
    Hypocalcaemia/ hypomagnesaemia
    Iron deficiency anemia
    lymphocytic gastritis
    Muscle weakness
    Muscle wasting
    No obvious physical symptoms (just fatigue, overall not feeling well)
    Pallor (unhealthy pale appearance)
    Panic Attacks
    Peripheral neuropathy (nerve damage)
    Stunted growth in children
    Vitamin B12 deficiency
    Vitamin D deficiency
    Vitamin K deficiency
    Voracious appetite
    Weight loss
    Conditions and Disorders Associated with Celiac Disease:
    Addison’s Disease and Celiac Disease
    Anemia and Celiac Disease
    Arthritis and Celiac Disease
    Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
    Attention Deficit Disorder and Celiac Disease
    Autism and Celiac Disease
    Bacterial Overgrowth and Celiac Disease
    Cancer, Lymphoma and Celiac Disease
    Candida Albicans and Celiac Disease
    Casein / Cows Milk Intolerance and Celiac Disease
    Chronic Fatigue Syndrome and Celiac Disease
    Cognitive Impairment and Celiac Disease
    Crohn's Disease and Celiac Disease
    Depression and Celiac Disease
    Diabetes and Celiac Disease
    Down Syndrome and Celiac Disease
    Dyspepsia, Acid Reflux and Celiac Disease
    Epilepsy and Celiac Disease
    Fertility, Pregnancy, Miscarriage and Celiac Disease
    Fibromyalgia and Celiac Disease
    Flatulence (Gas) and Celiac Disease
    Gall Bladder Disease and Celiac Disease
    Gastrointestinal Bleeding and Celiac Disease
    Growth Hormone Deficiency and Celiac Disease
    Heart Failure and Celiac Disease
    Infertility, Impotency and Celiac Disease
    Inflammatory Bowel Disease and Celiac Disease
    Intestinal Permeability and Celiac Disease
    Irritable Bowel Syndrome and Celiac Disease
    Kidney Disease and Celiac Disease
    Liver Disease and Celiac Disease
    Malnutrition, Body Mass Index and Celiac Disease
    Migraine Headaches and Celiac Disease
    Multiple Sclerosis and Celiac Disease
    Obesity, Overweight & Celiac Disease
    Osteoporosis, Osteomalacia, Bone Density and Celiac Disease
    Psoriasis and Celiac Disease
    Refractory Celiac Disease & Collagenous Sprue
    Sarcoidosis and Celiac Disease
    Schizophrenia / Mental Problems and Celiac Disease
    Sepsis and Celiac Disease
    Sjogrens Syndrome and Celiac Disease
    Skin Problems and Celiac Disease
    Thrombocytopenic Purpura and Celiac Disease
    Thyroid & Pancreatic Disorders and Celiac Disease
    Tuberculosis and Celiac Disease

    Lastly, Dermatitis herpetiformis is an itchy, blistering skin disease that also associated with gluten intolerance. Rashes usually occurs on the elbows, knees and buttocks. dermatitis herpetiformis can also cause significant intestinal damage identical to that of celiac disease. However, people who suffer from dermatitis herpetiformis may also be entirely free of noticeable digestive symptoms. Treatment with a gluten-free diet, in addition to medication to control the rash, usually brings about significant improvement.
    [This Message was Edited on 07/31/2009]
  16. Shananegans

    Shananegans New Member

    To view all of the posts in a thread when you reply, if you Right-Click on the "Reply" link and then in the menu that comes up choose "Open in a new window" then you will be able to go back and fourth with the two open windows and still be able to see all of the replies before you. I hope this makes sense!

    The best tests for Celiac are either the biopsy of the small intestine or the genetic testing. The biopsy is the "gold standard" and is usually correct. And they say the genetic testing is never wrong, but I don't know how true this is.

    I'm not sure what the best tests are for hormones (as I am myself working on this right now) but if I come across anything that seems like a wonderful answer, I will let you know.

    Thank you for your reply!
  17. Shananegans

    Shananegans New Member

    Gluten is everywhere! That is the most frustrating part. Now that I do not purposely consume gluten, I am still having a cross contamination issue and will admit I'm not as careful as I should be but at least now I know why I'm passing out! Thank goodness.

    I hope your husband sees improvement in his quality of life, I know it has been an uphill battle for you both. Any gluten issues with you too? Or is it just the hubby so far?

    It is always so good to hear from you and I hope you both are doing well.

  18. Shananegans

    Shananegans New Member

    You are exactly right with your last paragraph, no one will ever get great answers if the "root cause" is never found. And it is unfortunately that we have to be our own doctors. And with any sort of malnutrition it will always start the conversation of what came first, the chicken or the egg.

    thank you for your addition to the conversation!
  19. Shananegans

    Shananegans New Member

    Thank you for the link!
  20. holiday16

    holiday16 New Member

    Has a GF diet helped your trigeminal neuralgia? That is one of the things that gluten will trigger for me. I had an MRI to check for MS which came back clean. My symptoms on gluten pretty much mimic MS, but they resolve off of gluten. Just curious if it affected your TN at all.