Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

[WildFlower1]

Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test.

Let me please express my gratitude for taking your time to help!

I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac. 

I could never get an “official diagnosis” because I was not eating gluten for years.

 

Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac.

Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years.

Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test.

I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac.

I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks.

One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.

 

Thank you VERY much for your help, I truly appreciate it!!

[WildFlower1]

The results of my blood tests after 4 weeks:

*Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE”

*Immunoglobulin IgA —-> “1.25”

*Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”

 

 

[trents]

Welcome to the forum, @WildFlower1!

The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption

Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing.

Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted.

But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?

[WildFlower1]

Thank you for the reply!

Doctors over the years have tested me for everything under the sun and tests are normal, except the decreasing bone density, high FSH (in regards to infertility), lower iron, and all the other celiac symptoms I experience. When I was 15 the infertility started (my whole life growing up I always ate gluten, and always had severe stomach problems, I’m an adult now and I still remember the stomach pain as a child) and then from here, they couldn’t figure out why. At the same time I was having all these celiac symptoms but nobody ever put two and two together.
 

Eventually in adulthood I went off gluten and dairy and felt better. Later in life, the topic was brought up by doctors, but they could never actually test for celiac because I was off gluten for years.
 

Just recently multiple doctors brought it up again, and said I should rule it out. So the ruling out of celiac, which is direct correlation with these symptoms, infertility at a younge age, on the edge and getting into osteopenia, etc. etc. is the concern. I was off of dairy for the same time as gluten because it made me sick. I did not surely have adequate calcium/D intake as well over these years.

 

The matter of concern is to once and for all get celiac ruled out for my own health, a gastro doctor recommended I get it done and other doctors to confirm yes or no to officially rule it out. 

For these 6 weeks I have not been eating enough gluten then it seems, if 2-3 slices of bread a day is not really enough. I should increase my intake of gluten then and extend the test time?

 

Thank you very much for your help!!

The test for Immunoglobulin IgA being a value of —> “1.25” shows it is in the normal range of 0.54-4.17 g/L on the test. 

[WildFlower1]

Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 

[trents]

I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature). 

All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease.

But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?

Edited February 20 by trents

[WildFlower1]

Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total. 

 

My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!

[WildFlower1]

I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.

[trents]

Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand?

And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free.

Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?

[WildFlower1]

Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decision. I understand the benefits of eating gluten-free long-term, but I’m unsure how much longer to stick with the challenge to avoid another false negative celiac blood test.

 

What I would do differently if the test were confirmed positive is I’d receive a small amount of government help with gluten-free foods as a confirmed celiac. Doctors would be able to rule out further exhaustive testing. I’d also become even more strict about avoiding cross-contamination (for example, when eating at someone’s house, they may say something is safe, but it could have been cross-contaminated with gluten, or when going out to restaurants, they might say it’s fine, but it really isn’t). So, I would be extremely strict with cross-contamination if I were 100% confirmed as celiac, even though I’ve tried to be over the years but still seem to get sick.

 

Any advice on how long is typically recommended to continue the gluten challenge to avoid a false negative on the celiac blood test would be greatly appreciated!

[trents]

I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above. 

You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.

[knitty kitty]

Welcome to the forum, @WildFlower1,

Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article.

Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.  

Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease.

We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already.

Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts.

I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.

[DebJ14]

Good luck to you.  I would not get past that first slice of bread.  I would be vomiting and have diarrhea within 30 minutes and it would continue for hours and I would feel like I was hit by a truck for days. 

My functional medicine doctor told me to stop taking Calcium and to significantly up my Vitamin D, add K2, lots of Magnesium, some boron and collagen.  This was all recommended after taking the Spectracell test for nutrient deficiencies.  Started doing this at 54 when diagnosed and at 72 no issues with the old bones.   

[Beverage]

My doc has me taking Boron supplements for osteopenia