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Need Some Help Please


jasonD2

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jasonD2 Experienced

Hi- not sure if you can help me but I have a question.i just had a stool test and my anti-gluten antibodies were elevated (the value was 21 with 10 being the cut off for positivity on the lower end and 350 being the upper cutoff)- the person who tested me said i should go gluten free for life, thing is do I really need to? the stool tests are more effective for detecting antibodies but with a value only 11 points above what is considered normal, is that cause for a radical dietary change? i just dont wanna go my whole life w/o gluten if its not entirely necessary. I had a blood test for celiacs 5 years ago and it was negative but since then I have had a variety of digestive problems including IBS, constipation, lactose intolerance and food sensitivities. i'm just not sure what I should do - i'd appreciate any advice or feedback.

Thanks,

Russ


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mommyagain Explorer

around here, we tend to call IBS a symptom, not the cause :) As for going gluten-free, the best thing you can do is give it a try. I would say give the diet an honest try for 6 weeks. Chances are, you'll feel better and "discover" all kinds of symptoms that you had, but didn't really attribute to food. Most people start feeling at least a little better within a few days, if there's a lot of damage to your intestines, it could take longer. As for your levels only being "a little" high, there are a lot of folks on here whose levels were lower than that, but their response to the diet is nothing short of amazing!

If you truly don't believe you have to go gluten-free, nothing any of us say will change your mind. But, before you decide to ignore the advice to go gluten-free, do some reading about what gluten does to the intestines of celiacs. And read about the subsequent illnesses that are common for celiacs who were undiagnosed for a long time.

jasonD2 Experienced

i think i'll give it a try :-) thanks for your help. Do you think i should still go for a biospy? Also I find that when i remove gluten from my diet I get extremely constipated..like i wont go for 4-5 days w/o taking a laxative or Mg. longest i ever stayed on the gluten-free diet was 2 weeks and then i couldnt take it anymore

MNBeth Explorer

I would have the doctor run another celiac panel (blood test.) A lot can change in 5 years, and many people who initiallly tested negative will test positive later (because the condition has progressed, sadly.)

Of coure the blood test is often not conclusive, but it's a simpler, less invasive way to start. But that's just me. ;-)

happygirl Collaborator

If you have further bloodwork/biopsy done, make sure that you continue to eat gluten-don't go gluten free til testing is completed.

Make sure that the bloodwork consists of the five Celiac tests.

Total IgA

AGA Iga

AGA IgG

EMA IgA

tTG IgA

If you have the biopsy, ensure that they take multiple biopsies in multiple places.

gfpaperdoll Rookie

Russ, you need to give up dairy. When you are eating gluten it balances out with the dairy. When you cut out gluten & not dairy you get the constipation. I think it will go away, if you cut out dairy. Also lots of fresh fruit & prunes are good...

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    • trents
      Well, the only thing I would conclude with would be, if you choose not to trial the gluten free diet, is to encourage you to get periodically tested, either antibody blood tests or the biopsy or both. I think it something that needs to be monitored.
    • Sking
      So the strange thing is I don't have any symptoms at all, except the soft stools (comes and goes) which they told me was from the Lymphocytic colitis. I had some mild positives on my antibody test and one gene was positive which is what made my doctor go ahead with the endoscopy. The reason they started any of this was finding the lymphocytic colitis this past summer after I had C Diff and she said, Well....it may be from something like Celiac.... Definitely a lot to learn through all of this and I appreciate people like you taking the time to help out a stranger like me!
    • trents
      Well, I wouldn't rule either out. And you might consider trialing a gluten free diet for a few months to see if symptoms improve. That would tell you a lot. By the way, the incidence of other bowel diseases is higher in the celiac population than it is in the general population. And even if you don't have celiac disease, you could have NCGS. Gluten is just problematic for a lot of folks for various reasons.
    • Sking
      Thanks for taking a look. I also just did some research and saw that increased numbers of intraepithelial lymphocytes and villous distortion can possibly be from lymphocytic colitis (which I was diagnosed with this past summer)....so fingers crossed this is what she will say it is.  
    • trents
      IMO, Part 3 has some abnormalties that could indicate the early stages of celiac disease but the doctor is tentatively thinking not, at least at this point.
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