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Possibly Celiac

AzSharouk

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AzSharouk Newbie
AzSharouk
Posted

My first post :) . I am going to the doctor Friday for my first discussion about my digestive/bloating/health problems as an adult. Ive had problems pretty consistently since 8/9 years old but always had doctors that didnt listen to me because I am seriously overweight. Havent had insurance in ages, but now I do fortunately.

I am not good about discussing things with doctors: they sort of steamroll over with me. Any suggestions on how I should approach this discussion. I have nearly all the symptoms, except weight loss and proven vitamin deficiencies (I supplement up the wazoo). I dont want to get trapped into thinking this is what I have and miss something else, but I also want to have a strong case for pursuing this. btw, my symptoms: extreme bloating (I can go up 2 clothes sizes in an afternoon!), abdominal pain, severe gas, c/d, hot/cold feelings, fatigue, foot/leg/hand numbness, muscle aches, mouth sores, tooth enamel loss/massive cavities, uncertain food sensitivities, lack of menstural cycle, allergic reactions and rashes to common products.

I think this fits celiac/gluten-intolerance pretty well but are there other things I should be looking at? Any suggestions would me appreciated! I want to be prepared with lots of questions and requests. Thanks

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Jestgar Rising Star
Jestgar
Posted

You can always try the "I've been hearing a lot about this and I want to rule it out before doing more invasive tests" then ask for the whole Celiac panel.

gfp Enthusiast
gfp
Posted

You can additionally ask to have someone accompany you and make sure your not streamrolled....

ITs much easier for a MD to steamroll one person than when you have someone to back you up...

Remember its close to 1:100 people have it... so don't get fobbed off with "but its so rare" or "I don't think you have it" like Jestgar says either this or something else is wrong and this can be diagnosed with a simple blood test.

If the MD insists then ask what all the symptoms are... can he test for why you have .... (insert your list)...

Make sure you get a full panel and you need to be eating gluten for a month or so before hand to make sure...

Phyllis28 Apprentice
Phyllis28
Posted

Write down you list of questions and concerns. I find this works well in making sure I sure I communicate everything I intend to.

rsm Newbie
rsm
Posted

I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

Guest Karabear20
Guest Karabear20
Posted
I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

You know I was wondering the same thing because I felt better for a while, but then I felt worse...and now its getting better again. I am hoping that its just the process of my body going through such a change. I went from constant D to C and now im all gassy because im so empty and have been only eating fruit and meat because thats all i could keep down or that i wanted to eat in the past two days.

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    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
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      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

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      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
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      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
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