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Qusestion About Endo...and Already Gluten Free

Mama of 6

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Mama of 6 Rookie
Mama of 6
Posted

I have a endo scheduled for June 11th. I have already been gluten free since May 1st, if I had villia damage would it still show. If not when do I need to go back on gluten to be visible. I really am not wanting to, I live in horrible pain when eating gluten and take a LONG time to detox from it.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I do wish doctors would tell people not to stop with gluten until their endos and blood tests for celiac were all done. If you really need the endo you need to immediately get back on gluten and perhaps consider resceduling the endo for July or August. Does that thought curdle your blood? If so listen to your body. Your doctor can still check for other problems if you are already gluten free but not for celiac.

MitziG Enthusiast
MitziG
Posted

Yeah, you are likely to get a false negative now. It takes 3-4 months of heavy gluten consumption to show the damage- even then it is iffy.

Did you have positive bloodwork already? Combined with your obvious symptoms, you really don't need a confirming biopsy, unless your dr insists and you feel you need his word for a diagnosis.

This is why many people give up on the "gluten challenge" and diagnose themselves. Getting sick from gluten means you shouldn't eat it. Period.

Mama of 6 Rookie
Mama of 6
Posted
  • Author

I didn't have positive bloodworm it was actually negative...I just happen to be getting the endo for constant nausea. Just was hoping that they were able to see something. However I am not willing to gluten myself for a POSSIBLE diagnoses.

Just a side note my son did have low IgA level. And is now being tested for IGG levels. Just not understanding why his would show and he is only 6 compared to my while life of eating gluten. I am more frustrated than anything, but I am feeling greatful that I found the culprit.

MitziG Enthusiast
MitziG
Posted

I had undx celiac for 30+ years. My blood tests were a weak psotive. Endoscopy showed many years of damage, total villous atrophy.

My daughter (12) had high blood tests, but not as much damage to villi (though still positive)

My son (7) had very high antibodies, total villous atrophy.

I have a THEORY that because my immune system was so wore out from years of gluten onslaught, it could not muster much of a response anymore to make antibodies to gluten- or anything else I was constantly sick with every little bug that came around- now I NEVER get sick!

tom Contributor
tom
Posted

Yeah, you are likely to get a false negative now. It takes 3-4 months of heavy gluten consumption to show the damage- even then it is iffy.

...

Any link for that? I've been trying to gather info on gluten challenge durations & qtys, but I've found very little.

IMHO, a challenge of "3-4 months of heavy gluten consumption" is very rare.

People really have gotten positive celiac disease biopsies from just weeks of moderate consumption.

SO many variables of course - for all we know some subjects were only gluten-free for a month, while others were gluten-free for years before a study began.

MitziG Enthusiast
MitziG
Posted

No links, just going by what I have read here many times. Obviously, every person is going to be different, and the OP may show damaged villi still. Or they might do the full gluten challenge and still come up negative. I tend to error on the side of caution. If someone is going to have the procedure done, best to give it the best chance of showing up!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I didn't have positive bloodworm it was actually negative...I just happen to be getting the endo for constant nausea. Just was hoping that they were able to see something. However I am not willing to gluten myself for a POSSIBLE diagnoses.

Just a side note my son did have low IgA level. And is now being tested for IGG levels. Just not understanding why his would show and he is only 6 compared to my while life of eating gluten. I am more frustrated than anything, but I am feeling greatful that I found the culprit.

Was your total IgA tested? You may be low also. In my family I was severely ill for many many years and always showed a false negative. Both my children were low positive on testing though they had much milder GI symptoms. Celiac testing really leaves a lot to be desired.

Mama of 6 Rookie
Mama of 6
Posted
  • Author

My total IgA wasnt low. I am just really confused, I just got his results from the IgG and they are normal (7.4 units Normal 19 and below) However his IgA was even lower now. Ugh....I don't know where to go from here.

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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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