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Not Diagnosed But.......
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Last February my Endo gave me the Celiac blood workup. My Mom has Celiac and my sister and I have diabetes, so there is a good chance of problems in this area as well.

Well, my IgA showed an irregularity (I think it was a 60 and normal was 30). Every other test was totally negative and in fact could not be even conducted. They sent me for a bone scan, which showed very little problem and they also checked for anemia etc. I didnt show any signs or symptoms of anything.

This year I have started to show a slight problem with anemia, though they are not concerned about it. Now the problem with my stomach is a rather constant problem of (what we call on another board "Burbbling.") Bubbles bursting, and some gas but no other problems at all. I know there is a possibility of thyroid problems causing stomach trouble, and I have been treated for Graves disease and am now hypo thyroid. I could easily also have diabetes related stomach damage.

I have no desire to have the old tube down the throat, but my physicians wouldnt mind ordering another blood test. Is this something that might show a change? I assume if everything was still negative, it might mean I had a different sort of problem?

again, I have no symptoms but this bubbling feeling, and it is bothersome but not something that makes you feel sick. I have tried to check what causes it, and am more led to believe it comes from Diet Soda, Onions, Cabbage, and for some reason Instant Oatmeal. I can not tie it in to eating breads of any kind. Last night I intentionally made a meal of stir fried veggies and rice, and today the problem has been just awful. I know there are hidden sources of Gluten though, but it just doesnt seem to be connected to that.

Any thoughts?

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Hi Tasha,

I don't have a definite yes or no answer, the best I can say is maybe! The only definitive test for Celiac is the endoscopic biopsy (camera down the throat). Even that is not foolproof, as the skill and experience of both the gastroenterologist taking the biopsies and the pathologist examining the biopsy slides are crucial. However, it is much more determinative than the blood tests.

As for your reservations about the endoscopy, fear not! They will give you a mild sedative and you will not remember a thing. Mine was a breeze and I would consent to have another one in a heartbeat!

Unfortunately, there are no hard and fast symptoms of Celiac Disease. That is one of the things that makes this disease so difficult to diagnose. I recommend discussing the possibility of an endoscopy with your gastroenterologist, and if he/she thinks it's warranted (I think it is), get it done!

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Thanks, I just went ahead and had the Endo put another blood test on the paperwork so I can see if there is any difference over one year. I figured that was a safe place to start!

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From all that I have read I t hink you probably are pre-celiac, and you could do a stool test with "enterolab" which is more sensitive than the blood test.

The Italian Doctors who are way ahead have now come up with a test similar to the stool test, they think this is the way of the future because the blood test doesn't pick up everyone.

Good luck!

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I know, I read the research on this and I think it would be very beneficial, but I dont have the money to invest in it!

Wonder if they ever do research studies? I would be perfect for it.

And I agree, I think one day I could have Celiac.

Mom didnt get really sick until she was 65, but by then she was pretty miserable.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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