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Recently Diagnosed With Celiac
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8 posts in this topic

New to the forum

2 days ago I was told I had celiac

I guess learning to change everything about what you should eat and drink is scary

As a question or 5 😄

Can celiac cause night sweats , stop u from sleeping , eating , thinking too much , and no engery

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As a question or 5 😄

Not sure what this means?

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thinking to much isn't a bad thing, however the rest of it can be celiac based.

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Yeah, changing everything you eat is scary. However, most people can eat meat, vegetables, and fruit which they have been eating. For almost everything you can find substitutes. Work to make the changes, but give yourself time to adjust.

Sorry, you were surprised by this news, but glad you found out while there was time to heal. Yes,

you might have no energy,

it might be hard to think,

you may be foggy.

or have extreme fatigue,

but the disease is controlable. You can begin to heal.

Oh, I have night sweats, but I don't know if they are celiac related.

I would like to hear more of your story if you have the strength now. Otherwise over time you can heal.

My story in on the blog section of the forum. You can click on more in the upper left and click on blogs. I am desperateladysaved. The post "Back from Nowhere' tells the beginning of my story.

I hope you will be feeling better and better as time goes on.***

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Yes to all of the above. Whenever I get glutened, I get night sweats, have foggy thinking, no energy, etc. I hope you decide to adopt a very restrictive gluten-free diet. You won't be sorry! Welcome to your new feeling of wellness!

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The night sweats may be due to a Vit D deficiency, which would not be surprising if you have celiac.

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Was out yesterday kinds was bad and right now I'm paying for it my kids and gluten-free told me off but never thought how bad I'll feel touching gluten again

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Was out yesterday kinds was bad and right now I'm paying for it my kids and gluten-free told me off but never thought how bad I'll feel touching gluten again

Welcome to the forum, Ezzeryen. I'm not really sure what you're saying here.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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