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Furious, confused, and REALLY tired of this.


MissTeaMuse

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RecoveredCeliac Apprentice
On 2/20/2023 at 11:41 AM, DebJ14 said:

Our son was being treated for pericaditis and lupus when he was a teen.  Because he was on large doses of Plaquenil, NSAIDs, and Prednisone he was prescribed a PPI.  Instead of just a 14 day course as now recommended, he was on it for nearly 2 years.  He was misdiagnosed, so the only drug he actually needed was the steroid for the pericarditis. It was drug induced, not systemic lupus.  Once we knew that, we began the process of weaning him off the drugs under medical supervision.  He ended up with NAFLD, which the gastro pinned on the combo of all those drugs  for such a long time.  Even now almost 25 years later he has horrible gut problems. 

you should sue


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DebJ14 Enthusiast
19 minutes ago, RecoveredCeliac said:

you should sue

We did!

DebJ14 Enthusiast
On 2/12/2023 at 8:58 AM, Grammy9 said:

Diagnosed 3 years ago by GI. At age 73. Never been sick in my life. You’re right it is totally overwhelming. Especially when you have a spouse that can’t understand it. I have DH reaction. But the gut pain is unreal. Dermatology tests showed allergy to wheat - negative! Sure! Allergists and dermatologists are not always the best source for diagnosing Celiac. Celiac many times comes with lactose intolerance. I tried lactose free milk. Took time for me to realize that I was still reacting to that. Oatly milk is the only one I can tolerate. Added vitamins. Huge improvement. I thought at my age it was time to enjoy eating out more. NOT! Not happy to be cooking at home but healthier. We travel a lot! Always have gluten free snack in my purse. Thought I could leave my kitchen as is. NOT! Convincing my husband was something else. It is overwhelming no doubt. But a good GI and accepting what you need to do to stay healthy will make a big difference. Hang in there. It will get better. 

I have Celiac, dermatitis herpetiformis yet I am not allergic, nor sensitive to wheat!  Celiac and dermatitis herpetiformis is the autoimmune reaction, which is different from an allergic reaction.

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    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
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