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Absolutely Frustrating...

MrsSprinkles

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MrsSprinkles Rookie
MrsSprinkles
Posted

Had an appt with my doctor today and she said she doesn't think it's a gluten issue because I don't have the typical symptoms and said the my mouth sores are unrelated even if it is a gluten issue because mouth sores are usually a sign of suppressed immune system...

Isn't celiac autoimmune and therefore wouldn't it be possible for me to develop the sores as a result of eating gluten and my system going haywire?

She started talking to me about the possibility of this all just being stress because my other blood work (with the exception of my iron and vitamin d) is normal...I cannot begin to tell you how fed up I am with being written off as someone with anxiety time after time especially when I feel so miserable it interferes with my ability to e the mom I want to be.

After pressing the issue she told me to go to GI and have him order the tests...fine I can do that but it's just the fact that I have been to doctor after doctor and its like they all think it's in my head...

I tried to explain to her that I noticed gluten was in a lot of products I use and have been experiencing topical problems...I also tried to explain that I have it up and after eating it I felt like crap and my mouth broke out...I cannot make up these things people! I cannot make myself have gas and bloating, I cannot make my mouth break out with canker sores, I cannot make myself nauseous and belch...these are real symptoms. Perhaps is gluten intolerance perhaps it's something else but SOMETHING is as has been going on with my body and it's NOT anxiety.

Can gluten intolerance vs celiac disease be determined through blood work? I've always thought of intolerance being almost impossible to detect unless you just stop consuming it and symptoms resolve??

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GottaSki Mentor
GottaSki
Posted

I am so sorry you are getting these answers - I got them for over two decades - it's stress, you are overworked, it's hormonal because of your recent pregnancies, you are depressed - I knew in my heart they were wrong, but I did let them dissuade me from pushing for answers until I was so sick there was no choice but to push.

Non-Celiac Gluten Intolerance can not be determined by ANY medical testing - only an elimination of all gluten can identify it. Of course not ALL those with Celiac Disease have positive blood work either.

Additionally, canker sores absolutely can be a symptom of Celiac Disease. Low Iron and Vitamin D are excellent indicators that you are not absorbing nutrients - has she tested your other nutrients?

I hope your appointment with gastroenterology goes well - you may want to see if there is a GI in the group you were referred to that has experience with or is looking for those with Celiac Disease - it boogles the mind that many GIs have little experience with Celiac and even those that will dismiss all but the "classic" symptoms :blink:

Once testing is done - regardless of outcome - remove ALL gluten for three months (six months is better) - this is often the best test for celiac and is the only test for intolerance.

Hang in there and keep fighting - make sure you write down a list of your symptoms - both past and present for your next appointment - if you have any skin issues take pictures - mine would always clear up by the time I got to the doctor and pictures helped.

grrr...I am angry for you.

kittty Contributor
kittty
Posted

Show your doctor this list of 300 celiac symptoms... Open Original Shared Link

...and highlight the Aphthous Ulcers line.

According to the University of Chicago (one of the top 10 universities in the world) it IS a typical celiac symptom.

shadowicewolf Proficient
shadowicewolf
Posted

Trust us dear, we've all been there. I have a main care doctor (who is excellent outside of this issue), that believes its an allergy and doesn't wanna hear elsewise -______________________________________________-;;

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