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Newbie Questons About Testing


BUGTWIG

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BUGTWIG Rookie

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn


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tarnalberry Community Regular

As you noted, you don't need an official diagnosis to eat the way you want, so there's unlikely to be a really good reason for a diagnosis. There's a question about whether or not, if you were hospitalized, but able to eat "real" food (non-IV nutrition, for instance) that you'd be able to 'demand' gluten free food, but that's about it. You can talk to your doctor about having it recorded that it's suspected you're celiac based on dietary results, but there are downsides to a formal diagnosis as well - in some cases (some people in the US, for instance, have been denied insurance).

MrsLady Newbie

I am new to using a computer to "chat" about stuff. So forgive me if I don't seem to know what I'm doing.

I need some help. I had an endoscopy that showed the "villi were blunted over" so bloodwork was done. The bloodwork was negative to celiac antibodies. I know this sounds strange to wish it was positive, but I'd really like to know what is wrong with me. I've been having medical tests for about 6 years (I'm 50 now). About 2 years ago I was finally diagnosed with a Vitamin D deficiency (osteomalacia) - the symptoms were the same as fibromyalgia - a prior diagnosis. As soon as I started getting sunshine without sunscreen I started feeling better. However, even though I can manage the pain with sunshine, I still have pain in my upper right side and often get stomach upset after I eat. There was never any explanation as to why I had the Vit. D deficiency, and Celiac would certainly explain the problem. My 23 year old daughter actually has more symptoms of Celiac than I do. We have the same doctor. Any suggestions on where to go next or what to do next?

Thanks so much for your advice to come!

mellajane Explorer

I had been sick since seven with vomitting hot cold sweats for days I am now 30. Someone a Dr. I was working for had seen me sick and suggested i stop eating wheat .I noticed a difference immedietly. At the time no one Dr. suggested that the test would come back negative when not eating wheat. I have never felt better and Dr.s still want to argue that I do not have celiac. This is the only thing in 20 years at least that has helped. Im gonna tell you it is a hard transition. If you are still getting sick there is something you are still using that has wheat or gluten in it. Remember read everything you touch or consume down to your cosmetics, shampoos ,lotions, its crazy....If you are feeling better stick to it. I have been gluten and wheat free for 3 years now. It does get better. Good luck

Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

Guhlia Rising Star
Hello

I have been eating wheat free for over 7 months. I feel a whole lot better not eating it. I get sick to my stomach and awful cramps followed by diarehha. I also get a migraine.

I choose to eat this way because I feel better. There are days that I still have attacks and had not eaten any wheat. I brought this up to my doctor and he brought up celiac. The problem he said I have to start eating wheat for the tests to be accurate. This is something I will not do to my self.

I talked about treatment being dietary why can't I just change the way I eat and not get an official diagnoses. Is this Possible??

I have since been eating gluten free. And I haven't had an attack.

In my past I have been diagnosed with Gurd IBS spastic colon and others. None of these diagnoses have taken care of the problem. I have taken medicines and made dietary changes. Still had attacks.

I am hopeful at the prospect that this treatment will help me. I am just not sure how important an official diagnoses is?

Thank you All

Jyn

So long as you're out of the school system, I'm assuming you are, a diagnosis probably isn't necessary. Actually, not having a diagnosis, as Tiffany stated, may save you some headaches in the long run. Celiac can make it very hard to get life/health insurances in the US. You may want to work with your doctor at getting gluten intolerant added to your charts so that if you ever have a hospital stay they will feed you properly, but other than that you likely won't need a diagnosis.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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