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Concerned Celiacs or misdiagnosed?

Natalia.Hillz
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Natalia.Hillz Rookie
Natalia.Hillz
Posted

I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful,  well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand,  now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer,  can someone help idk who else to go to, is this normal? Getting sick and then not getting sick?

Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something?

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Natalia.Hillz said:

I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful,  well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand,  now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer,  can someone help idk who else to go to, is this normal? Getting sick and then not getting sick?

Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something?

How were you diagnosed with celiac disease?  Both blood tests and biopsies via endoscopy?  What was your level of intestinal damage?  Or were you diagnosed due to your rash?   Was that biopsied?  If you have DH (celiac rash), it takes months to a year for it to go away.  DH suffers need to be super strict with their diet.

Your gluten splurge?  If you have celiac disease, symptoms can wax and wane.  It takes time for antibodies to start building and circulating.  Celiac disease has been said to be like a chameleon— always changing.  

trents Grand Master
trents
Posted

Cycling lady said everything I was going to say so, "ditto". I'm particularly curious about how you were diagnosed. You may actually have something else going on in your body besides or in addition to celiac disease.

I would only add that several recent studies are showing that cross contamination is much more of a factor in keeping Celiac disease "smoldering" than we had realized. Food products labeled "gluten free" are often not actually meeting up to the standard and the problem is even worse when dining out. Restaurants offering gluten free menu choices commonly do not consistently practice food handling techniques that will ensure the prevention of cross contamination. 

Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author

I was diagnosed through endoscopy,  nothing was in in the biopsy, never did blood work, she said my intestinal damage was Severe and it looked liked I was born with it, I have no idea what the rash is, honestly I think I'm allergic to the new laundry detergent, always been sensitive,  but are saying just because I didn't get sick I could get sick next time? I ate Cake yesterday and quesadillas everything wasn't gluten free still nothing new. ?

Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author
3 minutes ago, Natalia.Hillz said:

I was diagnosed through endoscopy,  nothing was in in the biopsy, never did blood work, she said my intestinal damage was Severe and it looked liked I was born with it, I have no idea what the rash is, honestly I think I'm allergic to the new laundry detergent, always been sensitive,  but are saying just because I didn't get sick I could get sick next time? I ate Cake yesterday and quesadillas everything wasn't gluten free still nothing new. ?

I will add the rash is fairly new, recently noticed it about 4 weeks ago

tessa25 Rising Star
tessa25
Posted

With silent celiac you have no outward symptoms, but you still have damage to your intestines. Which means you still have a significant risk of getting cancer if you don't go strict on your diet permanently.

The celiac rash is called dermatitis herpetiformis.

Celiac is not like an allergy where you do something bad then a few weeks later all is good.

cyclinglady Grand Master
cyclinglady
Posted
(edited)

I think you need to pull all your records, including the pathologist’s report and get a second opinion from a GI who has celiac patients.  Something is not adding up.  The biopsy should have seen damage.  That is way more telling than a visual.   You might be right that you do not have celiac disease or you might be a silent celiac like Tessa says (at least for now).   Many other things can damage the villi.   I would hate for you to not treat an undiagnosed illness.  

Keep ALL your medical records for life.  A hassle?  With all your health issues, it would be very wise!  

Edited by cyclinglady
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Natalia.Hillz Rookie
Natalia.Hillz
Posted
  • Author

I know in the beginning I wasn't a client celiac,  and I started getting the rash when I started using a different detergent,  so at this point I don't think the rash is related,  but thank you guys, hopefully I can figure out what exactly is going on here, I see my doctor in November and ill talk to him about it then

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