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Furious, confused, and REALLY tired of this.

MissTeaMuse
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RecoveredCeliac Apprentice
RecoveredCeliac
Posted
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
DebJ14
Posted
19 minutes ago, RecoveredCeliac said:

you should sue

We did!

DebJ14 Enthusiast
DebJ14
Posted
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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    • StuartJ
      Gluten Sensitivity

      By StuartJ · Posted

      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
    • trents
      Could this be a new intolerance

      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Could this be a new intolerance

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      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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      Could this be a new intolerance

      By trents · Posted

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      Could this be a new intolerance

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