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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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    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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