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Confused Have I Been Diagnosed Now ? Finally

Dellers

By Dellers
in Coping with Celiac Disease

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Dellers Apprentice
Dellers
Posted

I went to the hospital two weeks ago all my bloods were neg and my biopsy was normal. She took more bloods inc checking my DNA and some other ones.She didnt diagnose me at the hospital but with my symptoms she was very shocked that my biopsy was normal. Today I got a letter saying I am referring you to a dietitian for your gluten intolerance .What does this mean ?

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ravenwoodglass Mentor
ravenwoodglass
Posted

It means your doctor thinks you should avoid gluten. If you have to pay out of pocket to see the dietian ask when you call to make the appointment if they are familiar with the gluten free diet. Not all are.

Takala Enthusiast
Takala
Posted

It means that they would like you to try a gluten free diet to see if it will relieve your symptoms, in spite of the fact that your bloodwork and biopsy were "normal."

Gluten intolerant is what they call people who are ..... gluten intolerant, who can't eat it without reacting to it, but who may or may not have the "official diagnosis" which is usually based on having both positive bloodwork and biopsy. Did you get anything back on the genetics ? There's DQ 2's , DQ 8's, which are the celiac genes, (majority of people who are celiac have one or the other) but also some DQ 1's that are showing up as gluten intolerant.

Cheer up. This way you get to feel better if this is the problem instead of them attempting to tell you that it couldn't possibly be. I had everything but the Flashing Neon Sign On My Forehead and me telling them I responded to my self imposed strict diet plus crazy neuro symptoms, ataxia, bone problems and brain lesions and they STILL could not admit that it might be gluten intolerance. Fortunately I'm stubborn.

Dellers Apprentice
Dellers
Posted
  • Author

It means your doctor thinks you should avoid gluten. If you have to pay out of pocket to see the dietian ask when you call to make the appointment if they are familiar with the gluten free diet. Not all are.

Hi no I dont have to pay. I live in the uk the letter also states the dietitian also sees patients with celiac disease as well as gastrological disorders. So hopefully it will all be good :)

Dellers Apprentice
Dellers
Posted
  • Author

It means that they would like you to try a gluten free diet to see if it will relieve your symptoms, in spite of the fact that your bloodwork and biopsy were "normal."

Gluten intolerant is what they call people who are ..... gluten intolerant, who can't eat it without reacting to it, but who may or may not have the "official diagnosis" which is usually based on having both positive bloodwork and biopsy. Did you get anything back on the genetics ? There's DQ 2's , DQ 8's, which are the celiac genes, (majority of people who are celiac have one or the other) but also some DQ 1's that are showing up as gluten intolerant.

Cheer up. This way you get to feel better if this is the problem instead of them attempting to tell you that it couldn't possibly be. I had everything but the Flashing Neon Sign On My Forehead and me telling them I responded to my self imposed strict diet plus crazy neuro symptoms, ataxia, bone problems and brain lesions and they STILL could not admit that it might be gluten intolerance. Fortunately I'm stubborn.

Hi I have had no results about the blood work posted to me yet. Mail is so slow here. I have out myself on a gluten-free diet and feel great. I had a slip up well not a slip up more me thinking this wont hurt. Then everything came back bloated tummy pains etc.

Puzinbootz Newbie
Puzinbootz
Posted

I have been pretty confused as well .. for 2 years the Dr.s have tested everything coloscopic' endoscopic me twice, blood work and NM gastric empty...uhmm oh a Cat Scan and yet all have been neg. normal the BXs everything so the Gastro specialsit Dr says "no dairy no lactose no gluten Give that a go"... "check back with your primary provider"... I hurt every morning My bones ache, most of the N/D/V have slowed and I have stop losing the weight as rapidly for this I am thankful but I have no energy and I ache.I am missing a day a week from work.. any suggestions. on how to deal with the pain?? f

Marilyn R Community Regular
Marilyn R
Posted

Dear Puzz,

You may have other, hopefully temporary food intolerances and/or allergies that are popping up because of your weakened autoimmune system. Google soy allergy on the forum, that's a common one. Nightshades have been problematic for many people too.

If there was something that you were allergic to when you were a child but outgrew, you may have a problem with that particular food again. (Berries, nuts, legumes?) Good luck!

Wishing everyone good health and better days ahead...

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Puzinbootz Newbie
Puzinbootz
Posted
:) :) :) thank you and I will look into the potatoe and soy options...ugg I am running out of stuff to eat, I know us noobies all say that. I am use to a full and very active life and now I am reduced to feeling like the crypt keeper BTW I am 44 with the mind and attitude of 28, So I am really struggling with why my body thinking everything I put in it is the enemy.

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