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Do I Need A Diagnosis?


saundiie

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saundiie Newbie

Hi,

I am at the end of my rope. I have suffered from extreme bloating, awful gas and occasional diarrhea for the last couple years. I've been to doctors and discussed IBS and "adding more fiber and water" to my diet. I grew up eating oatmeal almost every morning. My mother is a dietitian (no longer practicing) and taught me how to eat well-rounded healthy meals.

In 2007, I was in studying in Spain for one month and had a very stressful, anxious experience because of factors outside of my control. It was when I returned that I started having problems. As I say, my stomach blew up. I tell my family this every time it happens, not knowing why or what to do-- nothing alleviates the pain.

I saw a gastroenterologist and had an an endoscopy and colonscopy. He said I had "ulcerations", the beginnings of ulcers. I don't remember the results beyond this. I cut back on coffee and wine, but 3 years later, I'm in the same boat.

A year ago, I was talking to a new GP about it and she "suggested" I cut out gluten. I did and a couple weeks better i was feeling better. It wasn't solved and so I started reading books about the hidden places of gluten, so now I'm even more vigilant.

Celiac has been diagnosed in 2 people in my family, both on my mother's father's side. One is my mother's cousin and the other is my mother's sister. My grandfather's relatives come from Wales.

I still have issues when I go out to eat since I do not quite know what to ask for yet. My question is can I even be tested for celiac if I have been off gluten for almost an entire year?? What are the benefits of the diagnoses?

THANK YOU!


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beebs Enthusiast

If you are gluten free you will come back negative on the tests. If you want a diagnosis you would have to do a gluten challenge which is basically eating 4 slices of bread a day for 3 months. Alot of people have done one on here and I'm sure they'll chime in:)

Just be aware that after being gluten free often people feel worse than before when they start eating gluten again...I do.

come dance with me Enthusiast

Nah we had the blood test but nothing else because her blood test showed up positive for the gene and positive for the coeliac antibodies and my blood test showed up positive for the gene but negative for antibodies then on a gluten free diet everything changed and I wasn't willing to put her under anaesthetic for anything like that when there are ways around it. Either way the blood test was positive and she'll have a gluten free diet for life. Every time she is accientally glutened it has a very bad affect on her which further proves why I won't make her eat it.

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      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
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    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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