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jackietran

Unsure If Symptoms Is Related To celiac disease?

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Hi everyone,

I had made a previous post in which my blood test came back negative for Celiac Disease. I wanted to ask if this is typical for someone who has celiac disease - sometimes I am able to eat a food item containing gluten (such as bread) and be fine. Other times, I have to run to the bathroom almost immediately after consuming it. I have noticed that whenever I eat pizza (e.g. Round Table, Macaroni Grill, Mountain Mike's) , my stomach always makes noises, begins to cramp, and I always have diarrhea. However, the one time that I did not have to make a run for the bathroom after eating pizza was because it was gluten-free. This also goes the same with dairy products - I can eat cheese and be fine, but if I eat ice cream or drink milk, I'm often having to run to the bathroom with stomach pains. However, I do notice that even when I eat something with gluten or dairy and have no side effects after (immediately to 2-3 hours later), I always have diarrhea even if there are no stomach pains. What do you think this could be? If not celiac disease, what could these symptoms pinpoint to?

I am also a Type 2 diabetic and my most recent blood tests came back stating that I am severely deficient in Vit D. Per doctor, I am taking vit d and calcium now. While looking online about Vitamin D, I stumbled across many websites stating that there is a link between vitamin D and celiac disease. When I asked my doctor this, he said, "Absolutely not." I'm not so sure... would someone have an answer to this?

I want to demand a retest for celiac disease, but would like to know more facts and information, before speaking with my doctor. Thank you for all of your inputs!

Jackie

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How long ago was your blood test and did you see the actual results with the reference range? Sometimes a doctor will call a low positive a negative. If your blood tests were done a while ago it wouldn't hurt to tell your doctor you want them run again. That said some of us just don't show up on blood tests.

Your reaction to dairy is pretty typical of someone with celiac. The same area that is damaged by celiac is the area that forms the enzyme we need to digest lactose. Stuff like ice cream and milk are high in lactose but some cheeses, like cheddar, have very little lactose so they may be tolerated.

I had painless without warning D for years before the extremely bad cramps began. Once the cramping and pain began it was incredibly bad though.

Having vitamin and mineral panels with low levels is also common with celiac as we don't absorb the nutrients from our food and supplements. It is also fairly common to have high inflammatory markers and even things like liver panels can be off due to celiac.

Since the rate of false negatives on testing is high you will want to do a strict trial of the diet when testing for celiac is done.

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Two questions... Are you already eating gluten-free? And did your blood work include genetic testing?

If you have gone gluten free then you will need to do a challenge for several weeks before retesting. Even if you've "cut way back" you may need to challenge before testing. I recently saw my MD about testing and even though I am not gluten-free yet (though have cut way back) she still wanted me to "load" for 4 weeks before testing.

Gene testing can be done without change in diet. Though it is not "diagnostic", I have read a lot of info that indicates if you have the genes not only are you at increased risk of disease, but even pre-disease you can have pretty severe gluten intolerance, even if nothing shows on your antibody tests.

Do you need a "diagnosis", to put a name to your situation, or would a true gluten free (100%) trial of a few months provide you with enough information? Only you can say.

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i wonder why your doctor was so adamant on negating a link between celiac & vitamin D deficiency?????? sure it could just mean poor health- or you live somewhere with no sun... but it's very much linked to just about ANY Autoimmune Disease!!! Especially Celiac or Hashimoto's/Hypothyroid which often leave the patient with digestive issues & malabsorption.

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Two questions... Are you already eating gluten-free? And did your blood work include genetic testing?

If you have gone gluten free then you will need to do a challenge for several weeks before retesting. Even if you've "cut way back" you may need to challenge before testing. I recently saw my MD about testing and even though I am not gluten-free yet (though have cut way back) she still wanted me to "load" for 4 weeks before testing.

Gene testing can be done without change in diet. Though it is not "diagnostic", I have read a lot of info that indicates if you have the genes not only are you at increased risk of disease, but even pre-disease you can have pretty severe gluten intolerance, even if nothing shows on your antibody tests.

Do you need a "diagnosis", to put a name to your situation, or would a true gluten free (100%) trial of a few months provide you with enough information? Only you can say.

I have been buying more and more gluten-free food items, but have not converted completely. Because I am diabetic and cannot go hungry, I have resorted to buying gluten and dairy free cereal bars since i can't eat cereal w/ milk due to lack of time in the morning to make a proper breakfast and to wait around for 1-2 hours after incase I need to use the bathroom (yes, it has gotten to the point for me that before I eat any kind of meal, I have to know if I will have time after to use the restroom or else I will wait until later!). I'm still eating some gluten during lunch and dinner since I have time to relax incase I have to use the restroom.

I don't think I need to be officially diagnosed. It's more about not really knowing when the symptoms are going to "strike" as some gluten food will be okay for me and others won't and would be nice if I just knew I was allergic or resistant to some kind of food. I don't want to give up all gluten food if unnecessary (e.g. no damages to my body). It's hard when I can eat bread one day and be fine, but then if I eat it the next day, I'm having severe pains.

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Sometimes, our reactions to gluten (and to dairy) depend on what it is consumed with. I am not sure why this is but have noticed in myself, prior to going gluten free, that if you eat the gluten or dairy item by itself with very little other food buffering it, you will respond immediately and often violently. If the offending item is eaten in small amounts with lots of other foods acting essentially as a kind of lining between the gluten/dairy and the intestinal wall the reaction will be less and/or delayed. You can't, unfortunately, tell whether or not gluten is damaging your body. Some people are in fact "silent" celiacs and never have any symptoms until they develop other autoimmune diseases (and they get tested for celiac and are positive). False negative rates on celiac testing however, are notoriously common and the only real way to test is to quit eating it entirely.

I would think it would be safe to assume that if you have cramping, pain and diarrhea in response to gluten and dairy, that you have a definite gluten intolerance and should avoid it (gluten) forever, and dairy until your intestine heals and you are able to digest it again. Give the diet a good try for three months and then come back and tell us you don't know if gluten is a problem. :)

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