Diagnostic Testing done on gluten-free Diet

ErinHasQuestions · May 10, 2022

Hello there all!

I am new to the forum. I am so frustrated. First, I am already on a naturally gluten-free diet for Interstitial Cystitis. Anything wheat ticks off my entire system. Having major bowel issues the last 5 + weeks and for years really and pain in my gut for a while I was referred to GI. So they did every test in the book it seems, but me being completely Celiac unaware I didn’t know to press on certain aspects… for example many tests say results can be wrong on gluten-free diet …

mind you I am not complaining if I am not celiac, etc … what I am saying is I feel like my doctor dispute me telling him I was on gluten-free diet he didn’t pick up on that and ran all these tests which are highly inaccurate in many ways if he is really testing for celiac. He told me … AND I QUOTE: ‘well, there is always hidden gluten… the tests are fine’ …

um, I cook all my own food, I eat eggs, veggies, fruit, whole protein, herbs, spices… I have food allergies, too so I’m super limited. I can’t eat dressings or acidic foods, sauces, etc … unless I know what’s in them because I make them.

anyways, I feel defeated that I am paying all this money for testing, I’m feeling like crap, and results with no gluten challenge there are faulty.

mind you, me eating wheat products for two weeks with my bladder will be hell on wheels, but it leaves the question, is that really my bladder or is it my gut?

I just want accurate tests…

my Calprotectin came back <5 mcg … I should do cartwheels but it’s now leaving me with so many questions.

I mean my tests should having me do flips cheering but I still feel defeated.

has anyone else here experienced something similar? How did you deal with the doctor to get the testing redone?

trents · May 10, 2022

Welcome to the forum, Erin!

Your post was a little confusing and it is not clear to me if your doctor has run the serum antibody tests that are specifically designed to detect celiac disease. Here is a primer for the tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Many doctors will only run the tTG-IGA test so request a "full celiac panel". The tTG-IGA is considered the best single test to run but some people's immune system responds atypically to gluten-related small bowel lining inflammation so these other tests may catch those people.

The celiac community knows from experience that there is a profound lack of knowledge in the medical community as a whole with regard to gluten-related diseases. So, we advise going armed with knowledge and be prepared to be appropriately assertive in order to get the tests run you need.

The Mayo Clinic guidelines for a pretest gluten challenge is the consumption of an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks before the antibody blood draw and for two weeks prior to an endoscopy/biopsy.

It is also possible that you may have NCGS rather than celiac disease. NCGS (Non Celiac Gluten Sensitivity) is 10-12x more common than celiac disease but the two share many common symptoms. Currently, there is no test for NCGS so celiac disease must first be ruled out. The antidote for both is the same, total ditching of gluten.

It is very common for celiacs to have other food intolerances that have nothing to do with gluten. Chief among them are dairy, oats, eggs and corn. But it can be almost anything. The common denominator is a hyper vigilant immune system that is falsely attaching "threat/invader" status to harmless foods proteins.

Scott Adams · May 10, 2022

Welcome to the forum!

It sounds like you've been gluten-free for a while due to real issues you have when eating it, which go away when you don't eat it. Given that you've already linked your symptoms with gluten, perhaps you don't need to go through what you describe as "heel on wheels" to try to get a formal diagnosis?

You may find this article interesting, and another one to help you make sure your diet and lifestyle are 100% gluten-free.

ErinHasQuestions · May 10, 2022

On 5/10/2022 at 5:16 PM, Scott Adams said:

Welcome to the forum!

It sounds like you've been gluten-free for a while due to real issues you have when eating it, which go away when you don't eat it. Given that you've already linked your symptoms with gluten, perhaps you don't need to go through what you describe as "heel on wheels" to try to get a formal diagnosis?

You may find this article interesting, and another one to help you make sure your diet and lifestyle are 100% gluten-free.

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Thank you for your article suggestions! I’m less fixated on a ‘diagnosis’ than I am trying to solve my gut pain and bowel problems. The situation I have right now with interstitial cystitis management is quite enough! That said, they are trying to figure out why my bowel irregularities, diarrhea, and the pain when stool moves through…

Truly wish they would have had me eat gluten for two weeks… the torture to know actual values is worth it. The frustration with the whole thing makes me want to throw up my arms. Now I feel like I have spent a fortune on tests that are not accurate. Especially the first one I list ….

celiac disease serology cascade:

igA mg/dL is 220

Transglutaminase antibody IGA Serum: Transglutaminase Ab, igA, S (U/mL

<1.2

C-Reactive / CRP

<0.1

In any case they have to do my colonoscopy due to age - there is a true way to confirm and rule out celiac for good at that point and I think my doctor is inclined not to have me eat gluten and do biopsy … what was the point of all the other tests then, they are not all accurate now either. That is if I understand how the few actually can measure with the gluten challenge test. Ugh. Perhaps you know more on this, Scott??

I am gonna have to pay for these tests they have run which include an ultrasound (check for hernia (none found)) tons of bloodwork and stools to rule out infections, bacteria, etc …. which all came back negative.

Again, I am not complaining about being ‘healthy’ on the reports… just want accurate testing and my doctors to listen. I am not feeling healthy at all.

When I say gluten free, I don’t eat anything boxed or packaged, I make all my own food from fresh fruits and veggies, meat/fish/chicken/eggs… I suppose veggies were harvested in a plant which does harvest wheat that could be an issue, if I were celiac—possibly. Also I have checked all my herbs and spices, my make up, everything… So the tests that could read negative for those on gluten-free diet, they do need re-run … I am ticked I paid for them (very expensive) and not informed of need to eat gluten. Ugh!

Shoot, I agree on continuing to eat gluten-free overall cause I do feel better. I didn’t even know I ate gluten-free until that celiac disease serology cascade came back and it clearly stated if patient is gluten-free they need to consume Gluten for a period of time and re-test. I though I don’t eat bread. Let me check my food and find out what ‘gluten’ actually is for what the doctor is looking at and then Pandora’s box was opened 😂😂😂😂 the doctor said, hidden gluten… I didn’t know what he meant truly until I realized after second guessing myself… I already am gluten-free. Sigh.

I really appreciate you passing these articles over. Yes, it is about overall wellness. I just don’t like throwing $$ down the toilet either with no solution to my root bowel issue.

Tomorrow is a new day.

trents · May 10, 2022

"In any case they have to do my colonoscopy due to age - there is a true way to confirm and rule out celiac for good at that point and I think my doctor is inclined not to have me eat gluten and do biopsy … what was the point of all the other tests then, they are not all accurate now either. That is if I understand how the few actually can measure with the gluten challenge test. Ugh. Perhaps you know more on this, Scott??"

A colonoscopy is not going to be of benefit in diagnosing celiac disease. Celiac disease does not affect the lower portion of the digestive track including the colon. Celiac disease damages the lining or the "villi" of the small bowel (duodenum) which is accessed with an upper GI (endoscopy). You would need to be eating the prescribed amount of gluten for two weeks for that one to be valid. If you do want a celiac diagnosis that would be the shorter gluten pretest challenge.

Wheatwacked · May 10, 2022

could be iodine deficiency. A sheet of Nori has 42 mcg iodine. Only a urine test can give an accurate indication of iodine intake. Or save the money on testing and eat 1 to 3 sheets of nori a day for a while and gauge the improvement. I found it quickly affected my upper body muscle tone. My prostate hypertrophy (diagnosed at age 21) improved when I started GDF at age 63 but suspect that the nori had a significant effect. We also need Selenium to help the iodine. I suggest 1 to 3 sheets of Nori a day and 200 mg Selenium.

Choose an organic certified Nori to avoid heavy metals.

The average intake of iodine in the US is today one half of what it was in 1970 though the official position is that as a population we are sufficient. How do you explain that the incidence of breast cancer has increased 242% while the population grew only 57% and in the US breast cancer is 5 times the rate of breast cancer in Japan?

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Iodine deficiency is highly correlated with breast cancer as well as other reproductive cancers. And one of the major detox symptoms of iodine supplementation is cystitis or bladder irritation as bromine is purged from the body. INTERSTITIAL CYSTITIS TREATMENT OPTIONS FOR WOMEN WHO’VE TRIED IT ALL

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The historic movements that have led to the iodine deficiency epidemic in the United States can be easily traced to broad-sweeping decisions made by food industry leaders in the 1970’s. At this time, products like bread and flour were no longer fortified with iodine. And when iodine was removed, bromine (which competes with iodine for receptor sites) was added to these food products. Brominated vegetable oils (used to emulsify citrus soft drinks) became common at this time [1]. https://alivenhealthy.com/2019/05/13/iodine-therapy/

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Conclusions: The combination of high serum iodine levels and high selenium levels was associated with a lower risk of breast cancer. Impact: A high iodine and selenium exposure may decrease the risk of breast cancer Serum Iodine and Breast Cancer Risk: A Prospective Nested Case–Control Study Stratified for Selenium Levels

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Edited May 10, 2022 by Wheatwacked

Scott Adams · May 10, 2022

Below is more info on the gluten challenge, in case you decide to do that. I think it would be perfectly fair to call out your doctor on this and have them cover any re-testing costs, as they did give you incorrect info for your initial testing. But, if you already know you feel better without gluten, the point may be moot...why not just stay gluten-free?