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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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
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    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
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