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Hi everyone, I'm very new here and if someone can help me through the ropes I'd appreciate it.

I've had chronic diarrhea for over a year and do NOT know what to do at this point. I've been tested for all the usual suspects. I've had the blood test for celiac and it came back fine.

Can someone bet gluten sensitive and still have a "normal" celiac test.

Help.

Tigger

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Yep, you absolutely can have a problem with gluten and still have normal blood tests. Of course, the first question that comes to mind is: what blood tests did you have? (A lot of docs don't run the full panel, or require more positives than others might require for a diagnosis.)

The other thing to consider, besides the interpretation of the tests is whether or not your intestines had enough damage for the antibodies the blood tests look for to escape the intestinal tract. They may not have had that much damage - yet.

If you still want to investigate gluten intolerance AND your doc already ran the correct tests with truely negative results (not just inconclusive), then I would encourage you to try the gluten-free diet (strictly) for two months to see how you feel. Do not, however, try the diet until you are done with all diagnostic testing.

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I've had chronic diarrhea for over a year and do NOT know what to do at this point. I've been tested for all the usual suspects. I've had the blood test for celiac and it came back fine.
I would guess that you may have a food allergy or intolerance. If I were you I would ask for the full celiac panel, a wheat allergy test, casein and lactose intolerance test, and maybe allergy testing (like skin prick tests) to see if you are allergic to other foods like, soy, eggs, and nuts.
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I had the runs for 11 years so I've got you beat! :rolleyes: My Celiac blood work came back negative too. However I went on a gluten-free diet and my runs stopped in a very short time.

Since then I've had a DNA test and I do carry the main genes for Celiac and every time I'm accidently glutened I get the runs for weeks again. Some people "need" to have their doctor tell them a test was positive, I don't need that, the proof I get with my reactions to gluten is enough for me.

You might want to try a very simple diet for a few weeks, thats how I did it. I ate chicken, rice and some veggies for a week or so and bingo the runs stopped.

Susan

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Maybe you should ask your doctor about the possibility of collagenous colitis..... After a decade of permanent diarrhea, they finally found out that's what it was....

Good luck!

Karen

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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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