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Back To Eating Wheat
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Does anyone know if you are diganosed with celiac and went back to eating wheat wouldnt you start having problems again with diarrhea? I went back to eating wheat because i had 2 different doctors and 1 said yes i have this and 1 said no, have been eating wheat for 3 months and no diarrhea but have problems with sores in mouth?

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If a doctor told you that you had it then I would say you have it. Doctors don't just diagnose celiac. Alot of doctors don't know what they should either so I think I would believe the one that said you have it.

You don't have to have symptoms with celiac and they do not necessarily have to come back. The point is the damage that it is doing will eventually catch up with you whether you feel the symptoms or not.

What tests did you have done that caused the doctor to diagnose you with celiac?

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kaitiUSA,

I had the endoscopy and colonscopy done and the biopsy on one of these tests came back Celiac disease, i cant recall which test said postive. After the doc retired that said i had celiac disease i went to a new doc, he gave me blood tests and these came back negative for Celiac so the new doc told me that i dont have it! I have been eating what i want since March but dont have diarrhea like i did when i was diagnosed, but i continue to have sores in the mouth.

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If you had a endoscopy done and that was positive then you have celiac. Even if you had symptoms before and don't now that does not matter. Symptoms or not and when they appear or don't appear does not tell anything about celiac. You still are getting damage. I think that this doctor may not know as much about celiac...you were diagnosed because they found damage caused from gluten in your intestines. That doesn't change with time...gluten will always do that to a celiac.

Were you ever gluten-free at a point? That can interfere with results of tests. You could have been IgA defiecient and that could have cause blood results to come back negative when they otherwise would be positive.

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I have to agree with Kaiti. It sounds like you have celiac if the biopsy was positive. The blood tests were probably negative because you weren't eating wheat at the time maybe, but it is still doing damage.

If I were you I would maybe even contact the place you were first diagnosed to see what your medical history says and what tests were done. Then I would also read alot of research on celiac on the computer so you can be aware of the disease. I have heard mouth sores are a symptom. Maybe someone else can be more help in that department.

Good luck,

Monica

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My uncle does not specifically get mouth sores, nor does he get diarhea. However, within 8 hours of eating wheat, rye or barley, his face and arms break out in a rash of blisters.

Diarrhea and stomach pain are not the only signs of celiac. The mouth sores you have could well be the dermatitis symptom.

If the new blood tests were for the antibodies, you very well could have tested negative, because your time being gluten-free had allowed your body to heal.

I had the blood test done last fall, and my test came back negative, it would be real easy to tell myself see the test was negative I don't have Celiac. But the truth of the matter is, the intestinal problems I was having before the test had diminished significantly in the months just before the test, when my gluten intake had been diminished. And the week before the blood test, I ate gluten at every meal to test the theory, and by the time I went in for the blood work, I couldn't sit in the waiting room for more than 15 minutes without a trip to the bathroom.

When I showed the family doc the info about Celiac, he agreed to run the blood test, but he told me before I left the office, "The food challenge has already given you the answer. Your body cannot tolerate gluten, and it thrives when you eliminate gluten." So, I don't have a 100% iron clad diagnosis of Celiac, but I know my family history, grandmother couldn't eat wheat, uncle has Celiac, Dad has faced the fact that he has it to some degree, and we suspect many others in the family have it but won't admit it. I have a 1 in 20 chance of having the Celiac genes....and I have the symptoms. I have Celiac, I just don't have to pay $300 for a DNA test for it.

tyki

I'm in a special club in my family

I have Celiac

what a heritage.

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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