Ulcerative Colitis?Crohn's?Celiac's? Please Help Me!

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jan 17, 2006.

  1. MamaDove

    MamaDove New Member

    For those of you that have followed my MESS over the past few weeks and have shared their thoughts, tips for tests and esp. med related info, I can't thank you enough...

    I finally received my blood work and bacteria testing back trying to assess my latest battle with rectal bleeding and abdominal swelling, diagnosed by gastro as Crohn's during the colonscopy but the pathologist deemed it severe active chronic colitis...

    My blood results read like this:

    WBC 15.4 High
    POLY 86 High (can't find out what POLY is on any site)
    LYMPH 1 Low
    MONO 1 Low
    EOS 0 Low
    AST 58 High
    LIPASE 607 High
    CRP .5 (Inflammation marker NORMAL, I have inflammation!)

    So, I did my research on the above (only listed anything high or low) and am puzzled more than ever...

    My instincts are leading me to Celiac's now...Went to Celiac.com and labtestsonline.org and got loads of info...Most people with Celiac's in the US take 10 years before properly diagnosed and only after a possible 20 other diagnosis have still caused them to suffer...

    I told my gastro this did not feel like the UC attack I had in 1995 where he originally diagnosed me with UC after colonoscopy and the BACTERIA testing came back negative yet the HIGH WBC indicates bacterial infection or inflammation and the CRP marker is negative for inflammation...My liver is usually slightly elevated but doc never persues this always saying this could be fatty liver or wants to biopsy, but I won't...

    The other LOW levels of MONO,LYMPH and EOS suggest I have been infected by a micro organism, CMV (cytomegalovirus) or toxoplasmosis...High LIPASE is Pancreas, and could mean Crohn's as per labtestsonline, thought that one strange!

    I think my latest attack came on after having a love affair with ice cream (Dove pints, I know it's bad, but I'm over it now) and I have done very well in the past controlling my FMS symptoms as well as my UC (without Asacol or other meds) by being on a "Protein Power" diet...However, my gastro nor my PCP ever discuss diet and dismiss it when I question them saying that I have UC, it's a disease, take the meds, period!

    So I see by previous posts that a sure way to diagnose would be to send my sample to enterolab, they will also test for egg and other allergies...The more testing the more it cost...

    I am willing to do the most extensive testing, pay it, get the answers I haven't gotten from all these experts, cure myself with diet and live happily ever after OR just simply go gluten-free and see what happens...

    Right now, I am still on 40mg. prednisone and 500 Cipro 2x day, still some bleeding, still abdominal swelling esp. after I bend, eat, walk lengths or basically any activity...No cramping, abd pain or diarrhea that is common in IBD...

    I know I am close to figuring this out...Any help that anyone can give to push me over that edge to BETTER HEALTH would be greatly appreciated...

    I know these meds are hurting me, my food is not being properly digested nor absorbed so NO NUTRIENTS = NOT GOOD FOR ME!!!

    I know when I hear from my gastro, his take on this will be, the tests don't show anything conclusive OR his famous line, "it's only a low positive, I'm not concerned"...

    Thank you all in advance for reading and hopefully helping me figure this out...Love to all~Alicia
  2. MamaDove

    MamaDove New Member

    just bumping up
  3. pirtpain

    pirtpain New Member

    I wasn't sure what title to use because you have so many problems. My husband has Ulcerative Colitis and takes a medication called Sulfasalazine and folic acid. He gets bloated constantly and deals with the pains that occur off and on. He acts as if the Dr. really doesn't say anything

    about different foods, but I'm sure diet must have something to do with it. How about seeing a dietition. It seems to me that there should be one available through your Dr. I'm sorry I can't be of more help. I hope you find some answers soon.

    PIRT
  4. Jen102

    Jen102 New Member

    stool tests for celiacs, and for other allergies. it shows if your body is making antigens to certain foods. hope you can get it figured out. jen102
  5. Sbilek

    Sbilek New Member

    MamaDove, maybe just a few tidbits that might help you. I used to have IBS, have it under control now. My husband was diagnosed with ulcerative colitis a few years back, we have that under control now, too.

    I can't tell from the ratios of what you posted what your problem might be, but whatever it is, I can tell you without a doubt that you must cut out all wheat gluten from your diet. It is in everything!!! from bread to packaged foods to pasta. You just have to check the ingredient labels. There are good substitutions for everything.

    Also, at least with ulcerative colitis, if you've had a colonoscopy done, the visual results of the colonoscopy are pretty conclusive if you have colitis. Not sure about Chron's as never did any research on that.

    With the colitis, they prescribed my husband to be on sulfasalazine. Now, here's the kicker, as there usually is with prescribed meds.

    People with colitis usually have a Vitamin K deficiency. So what does the sulfasalazine do? It depletes your Vitamin K from your body. So go figure!!!

    So I put my husband on alfala drops, which he puts in his water. Great source of Vitamin K. I also have him taking Aloe Vera Juice, which is really great for the intestines.

    Now with IBS, usually, also a wheat gluten thing, and what happens is you have these little villi in your intestines that get damaged by the wheat gluten. Once those villi are damaged, your intestinal health is compromised. I've found that taking L-Glutamine will repair those villi in the intestine.

    Also, with IBS, what your problem may be is parasites. A good parasite cleanse will usually take care of them. You can do lots of research on parasites and come to your own conclusion.

    If it's Chron's you're dealing with, sorry, can't be of much help. But if you've had a colonoscopy, and the pictures show colitis, I'd get on a regimen of Vitamin K from some source and cut out that wheat gluten.

    My husband has had several colonoscopies since the first one, and his urologist is amazed at his good colon health now.

    Hope this helps.

    Sbilek
  6. MamaDove

    MamaDove New Member

    Advice I will gladly follow...

    I was lloking into the celiac issue and willing to cut out the gluten...Vit K, in all my research, never seemed to come across that, great that you are helping your husband with his UC, good job, now you've helped me too...

    I drink alfalfa tea but will look for alfalfa drops...I got the aloevera juice yesterday and mixing it with the cherry juice everyone is raving about (for inflammation)and hubby just read your post and said after the storm subsides, we are out to the health food store for the Parasite Cleanse and the L-Glutamine...Got the probiotics yesterday too...Now if I don't OD on stuff that's good for me...Too much of a good thing???? hahaha

    Thank you bunches for taking the time to help me...I will let you know how I am progressing...Tell your husband he's one lucky man (as if he doesn't know it allready)...Keep p the great work!!!

    All the best~Alicia
  7. pirtpain

    pirtpain New Member

    I have IBS and my hubby has UC.This info. is so informative. I thank you all VERY MUCH!!!

    PIRT
  8. MamaDove

    MamaDove New Member


    I am so sorry you have gone through this nightmare...It is awful to know that your gut isn't doing what it's meant to...

    I am glad you found enterolab and you finally got your diagnosis, that's the beginning to getting well...

    I will certainly look into the info you gave me, matter of fact my hubby is pressing me to contact that lab to get the answers...He has been to my last 3 appointments along with the last colonoscopy and he was not impressed, to say the least...

    Thank you for the hugs too!!!

    Peaceful days to you~Alicia
  9. CANSADO

    CANSADO Member

    Hi Alicia,
    If you have not already, you should consider seeing a gastroenterologist with experience with Celiac disease now if you think you might be celiac. I think it's important to get tested BEFORE taking gluten out of your diet. If you have not been on a gluten-free diet, the doctor would be able to immediately get a couple of blood tests. If the tests were positive, the doctor might then want to do an endoscopy to get a sample of your small intestine to see if it has damage from Celiac disease and to check for h-pylori. If the blood tests and endoscopy are all positive, you can then be pretty sure that you have CD and should alter your diet accordingly. If you go on a gluten free diet now and then feel a LITTLE better, you might not be sure if the improvement is from the diet or something else. If you then wanted to see a gastro doc, the doc would then ask that you go back on a gluten-containing diet for a while before getting tested for CD. Better to get tested first so you can be sure of the diagnosis. You want to be sure about this, as a gluten-free diet for the rest of your life is a lot of work, which would be a shame if you didn't really have CD. On the other hand, you want to know if you really do have CD because a person with CD who stays on a diet that has gluten can be putting themselves at risk for cancer and a host of lesser things.
    Good luck with everything.
  10. HagerTX

    HagerTX New Member

    Sorry to hear about your trouble. I've had chronic GI problems for 10+ years and my diagnosis is not clear cut, despite thorough workups and 3 upper/lower endoscopies w/biopsies.

    Concerning Celiac...have they run a celiac blood panel to see if there is any preliminary indicator there? I had the panel run and it was somewhat suggestive. Allergy skin testing in 2000 indicated some allergic activity towards wheat.

    Anyway I've got 4 differing opinions among 5 doctors. allergic activity without disease, allergic activity without, Ulcerative Colitis (based on a lab test from prometheus labs) and IBS.

    I have put forth a lot of effort finding out what role diet plays in my stomach problems..turns out there have been significant triggers. Have you done any 'general allergy elimination diet'? If not, that would be a good place to start. Just reply back if you would like more info.