Struggling with gluten challenge and not sure it’s worth it - looking for advice / experiences / encouragement

[smiths]

Hi, I’m new to this forum and hope this post is okay. I’m just having a hard time and not sure what to do, and hoping maybe someone here can offer advice or at least encouragement. My husband is great and super supportive, but he doesn’t know any more about this than I do and it’s hard on him worrying about my health.

Long story short, I’ve been struggling with a poor immune system, lots of fatigue, muscle & joint pain, mood disorders, brain fog, etc. for a long time now. I also have pretty frequent abdominal pains, bloating/gas, constipation, and diarrhea, but TBH I didn’t worry much about my stomach issues and kind of wrote them off as the least of my problems. On paper I’m perfectly healthy and nothing ever shows up in my annual bloodwork, so I felt like I’m crazy for having all these vague symptoms and struggling to function so much.

Anyway this year I finally reached a breaking point and decided to really look for an explanation. I got lucky and found that eating gluten free helped my symptoms a lot (though ironically it helped the digestive issues the least). But I wanted to have a definitive answer still so I got in with a gastroenterologist for testing.

now my situation is:

- I ate gluten free and felt significantly better (but not perfect) for ~2 months.

- I saw the gastro and he told me to start doing a gluten challenge so they can test. I’m 1 week in and struggling with how bad I feel.

- In the meantime he also did bloodwork and a genetic test, and they both came back negative. He said the negative genetic test means I don’t have Celiac, but when I pushed him to keep looking for other things he told me to still be eating gluten and get an endoscopy w/ biopsy in a couple months.

- He’s also looking into gallbladder issues and SIBO as other possibilities to rule out. Pending tests on those.

I’m honestly really disappointed about the genetic test and just discouraged. I was really hopeful I was close to having answers and finding out my condition is treatable after all these years. I’m crushed now that it’s not looking that way. The gluten challenge is also tanking my mood and I feel like I don’t have the capacity to think rationally about all this. I keep wanting to quit every day.

I see a few people saying genetic testing is far from perfect and stuff like that, but I guess that statistically speaking there’s almost no chance they’ll find Celiac disease from the endoscopy. I don’t know if they’re looking for other things or why I need to be eating gluten if not for Celiac testing. Am I putting myself through 8 weeks of feeling lousy for nothing? Should I just be grateful to find some relief, eat gluten free, and accept not knowing what’s going on?

tl;dr I’m supposed to do a gluten challenge and endoscopy even though genetic testing was negative. I’m feeling pretty awful only 1 week into the challenge. Is the juice worth the squeeze or should I quit and get on with enjoying my life and just accept the uncertainty?

[Scott Adams]

A gluten challenge can be incredibly hard, especially when you’ve already experienced how much better you feel without gluten. It’s not just discomfort—it can affect your mood, energy, and ability to think clearly, so it makes sense that you’re questioning whether it’s worth continuing.

The genetic test piece is important to clarify, because that’s what’s really driving your doubt right now. When the common celiac genes are truly absent, it does make celiac disease very unlikely—but not completely impossible. More importantly, even if it does rule out celiac for you, it doesn’t mean your symptoms aren’t real or that gluten isn’t a trigger. There are people who have significant improvement off gluten without having celiac disease, and that still matters for your health and quality of life.

The reason your doctor still wants you eating gluten before the endoscopy is specifically to look for celiac-related damage. Without gluten exposure, the biopsy can come back normal even if celiac is present. That said, if your genetic test is definitively negative, it’s reasonable to ask your doctor directly: “What are we hoping to find on biopsy at this point?” If the only goal is to confirm celiac, and that’s already very unlikely, then you deserve a clear explanation of why you’re being asked to push through symptoms.

You’re also asking the most important question: is it worth it? And the honest answer is—it depends on what you need. A formal diagnosis can matter for some people (medical documentation, long-term monitoring, peace of mind). But for others, especially when the process is making them feel significantly worse, it’s okay to prioritize feeling better and accept a “working diagnosis” like non-celiac gluten sensitivity. There’s no rule that says you have to suffer for weeks just to prove something on paper.

Given how strongly you responded to going gluten-free, that’s meaningful data in itself. You’re not imagining things, and you’re not back at square one—you’ve already learned something important about your body. The question now is whether continuing the challenge gives you enough additional value to justify how bad you feel.

If you can, it might help to pause and have a very direct conversation with your doctor about goals and options. Some people choose to shorten the challenge, some stop early, and some push through—but it should be your decision, based on clear information, not just momentum.

Bottom line: you’re not failing if you stop the challenge. You’ve already made real progress by identifying something that helps. It’s okay to choose relief over certainty if that’s what your body needs right now.

[trents]

Hello, @smiths! Even if you don't have celiac disease you could still have NCGS (Non Celiac Gluten Sensitivity). There is real overlap in the symptoms, especially in the GI area. Both conditions require the elimination of gluten from your diet. The difference is that celiac disease is an autoimmune disorder and does damage to the lining of the small bowel over time when gluten continues to be consumed. NCGS generates many of the same GI discomforts but does not damage the lining of the small bowel. There is no testing for NCGS.

[knitty kitty]

@smiths,

I'm curious about the genetic test.  Some doctors only test for the two most commonly found Celiac genes HLA DQ 2 and HLA DQ 8, mostly found in people of Northern European descent.  However, there are other genes, HLA DQ 5, 7, and 9, that denote Celiac disease in other populations from the Mediterranean, Asia, and others around the world.  You may want to investigate genetic testing further.  

Continuing the gluten challenge would help the doctors discern whether it is Celiac or Tropical Sprue or something else.  Celiac disease must be ruled out to before diagnosing Tropical Sprue or NCGS.  Much of the damage done in Celiac disease is microscopic, so biopsy samples after gluten exposure can help with your diagnosis.  

Be sure to consume 10 grams of gluten per day.  A slice of bread contains about 1.5 grams of gluten.  Three grams of gluten is enough to cause digestive symptoms, but ten grams is needed to provoke an immune response strong enough so that antibodies made in the intestines move into the blood stream where they can be measured by blood tests.  Getting past the restart of the immune response is a bit rough, but symptoms should level out as your antibody level increases.

Hope this helps!

[smiths]

Thank you both for replying! I wasn’t sure anyone would answer, let alone leave such supportive replies. It helps a lot just to hear that I’m not crazy and be reminded that I don’t need a celiac diagnosis on paper for my improvement to be real. If I continue to feel better on a gluten free diet I’m truly grateful even if I don’t get to understand exactly why.

@Scott Adams you’re right I should try to have a more direct conversation with my doctor to get clarity on my options. I definitely tried to interpret the genetic results on my own to understand exactly what they meant, but I had to give up and admit I’m not a geneticist 😂. Maybe my doctor could help me get more details, or maybe I’m okay with not knowing if I decide I can get through the gluten challenge anyway. I feel like at the end of the day the endoscopy is the most definitive test they can do and will give me the most peace of mind. Which is why I’ve been trying to go through with it despite the doubts.

@trents the doctor did mention NCGS in passing and I tried to look up the research on it to understand more. But as far as I could tell no one really knows yet what’s going on in people with NCGS? Or if it’s even a single condition or multiple different things? I hope they make progress understanding it and finding ways to test for it. I feel like I’d be in a bit of a no man’s land if that ends up being the best diagnosis for me right now.

[smiths]

@knitty kitty thank you for your reply too! I don’t fully understand the test results, but the interpretation section only mentions HLA DQ 2 and HLA DQ 8. So I think likely they only tested for those. I also don’t think my doctor is especially knowledgeable in this area even though he’s a gastroenterologist. When I asked him how much I need to eat for the gluten challenge, he couldn’t even tell me… he said 3 grams a day but he wasn’t sure how much that meant in terms of food. So just eat a normal amount. I wouldn’t be surprised if he didn’t know the best genetic test to order.

I’m leaning towards trying to push through and getting the endoscopy to have more information. I think it’s worth it to me to know. Thank you for letting me know I should actually be eating 10 grams of gluten a day! I’ll make sure to be eating plenty from here on out so I don’t mess up the test.

[trents]

It is true that we don't have a clear understanding of NCGS. Some experts feel it can be a precursor to celiac disease.  Most people assume it to be more of a uncomfortable/inconvenient condition than something damaging to your health as is the case with celiac disease but I'm not sure we know all there is to know in that regard. 

[knitty kitty]

I'm so glad I could help!

Make it a "Bon Voyage" party and treat yourself to all your gluten-y favorite foods in the coming weeks.  

Chewy breads have more gluten in them than cakes and cookies.  Think thick pizza crust, rolls and such.  Vital wheat gluten can be weighed out and sprinkled into meals.  

Edited March 24 by knitty kitty
Typo correction

[trents]

knitty kitty, was there more to that thought?

[knitty kitty]

My cat bumped me while typing to remind me it's his dinner time.  LoL

[trents]

Yes, you can buy powdered gluten on Amazon or at many health food stores and, as knitty kitty said, add it to food or shakes after weighing it out. That takes the guess work out of it.

[Aretaeus Cappadocia]

28 minutes ago, trents said:

It is true that we don't have a clear understanding of NCGS. Some experts feel it can be a precursor to celiac disease.  Most people assume it to be more of a uncomfortable/inconvenient condition than something damaging to your health as is the case with celiac disease but I'm not sure we know all there is to know in that regard. 

@trents Just clarify, isn't NCGS independent of HLA-DQ2/HLA-DQ8?

[trents]

@Aretaeus Cappadocia, yes it is. And we know that OP doesn't have either of those genes. But we also know that not having DQ2/DQ8 is not quite a slam dunk rule out for celiac disease. 

[Scott Adams]

1 hour ago, Aretaeus Cappadocia said:

@trents Just clarify, isn't NCGS independent of HLA-DQ2/HLA-DQ8?

You’re partly right—non-celiac gluten sensitivity is generally considered independent of HLA-DQ2 and HLA-DQ8, meaning people can have it without carrying those genes. However, some individuals with non-celiac gluten sensitivity do still have one or both of those genes, so there’s some overlap. The key difference is that, unlike celiac disease, those genes are not required for non-celiac gluten sensitivity and aren’t used to diagnose it.

[iceman2026x]

Hi, I have celiac disease and need to avoid all gluten and cross‑contamination. Can you please tell me the exact brand names of the cooking oil, salt, pepper, and seasonings you use? Thank you!

[Aretaeus Cappadocia]

3 hours ago, iceman2026x said:

Hi, I have celiac disease and need to avoid all gluten and cross‑contamination. Can you please tell me the exact brand names of the cooking oil, salt, pepper, and seasonings you use? Thank you!

Different people might have different answers, but for me I don't worry too much about cooking oils and salt. I read the labels to check that there isn't some kind of warning but that's about all. I'm not overly worried about pepper either. I eat a lot of black pepper. I buy Costco Kirkland whole pepper and grind it as I use it. A pre-ground pepper would give me more concern about cross-contamination. I buy most of my seasonings from Penzeys. Almost all of their offerings are gluten free and they are pretty good about labeling the few items that have some gluten. There are other choice out there but that's what I do.

In this post and your prior post you seem to be very worried about some of the easiest things for a gluten free diet (except for seasonings, which can be tricky). Living with a gluten free diet is a marathon. All of us make some mistakes along the way but then we adjust and keep going. It should get easier for you as you get experience with it.

[trents]

@iceman2026x, how long ago were you diagnosed?

[iceman2026x]

21 minutes ago, trents said:

@iceman2026x, how long ago were you diagnosed?

2018

[trents]

@iceman2026x, are you certain that CC from spices has been causing celiac reactions in you or is this part of a "shotgun" approach? 

[trents]

@iceman2026x, in our house we use McCormick Grill Mates Montreal Steak seasoning and it states on the bottle it is gluten free. I picked up a bottle recently at Safeway. I wonder if other of McCormick's seasonings in this product line are gluten free. I didn't check.

[Known1]

On 3/24/2026 at 5:15 PM, knitty kitty said:

Some doctors only test for the two most commonly found Celiac genes HLA DQ 2 and HLA DQ 8, mostly found in people of Northern European descent.  However, there are other genes, HLA DQ 5, 7, and 9, that denote Celiac disease in other populations from the Mediterranean, Asia, and others around the world.  You may want to investigate genetic testing further.  

I am still amazed at all of the great information and discussions found here on Celiac.com.  Based on the quote above, what are you thoughts on this "Celiac.com Sponsored Post" from March 15th, 2026?  Are there better mail in type tests that cover the additional genes that you mentioned?

 

[Aretaeus Cappadocia]

7 hours ago, trents said:

@iceman2026x, in our house we use McCormick Grill Mates Montreal Steak seasoning and it states on the bottle it is gluten free. I picked up a bottle recently at Safeway. I wonder if other of McCormick's seasonings in this product line are gluten free. I didn't check.

McCormick seems to be gluten conscientious. Many of their products are "safe" but you have to read each label. I've purchased a few items from them and I trust that they are safe, but my symptoms are not so acute that I would be able to pinpoint a glutening. 

https://www.mccormick.com/pages/allergens

[trents]

@Known1, I think the key statement from the article you link is this:

"But there is one thing people with celiac disease share: Close to 100% of people with celiac disease carry the celiac risk genes HLA-DQ2 and/or HLA-DQ8!"

First, there is an old saying: "Close only counts in horseshoes and hand grenades." "Close" still leaves a possibility for the occasional person without one of those genes to have celiac disease. Yet, it is very true that medical practice today is statistically driven. This is mostly good - and cost effective - but it discourages thinking outside the box.

Second, as knitty kitty, indicated, that "close to 100%" stat may be skewed by the huge variability around the world of the availability of testing (healthcare economics) and existing assumptions about ethnic susceptibility to celiac disease which may itself discourage genetic testing among certain racial and ethnic populations. 

@Aretaeus Cappadocia, that is good to know and thanks for the link.

[Known1]

@trents That makes perfectly good sense.  My question still stands.  Are there better mail in type tests that cover the additional genes...?

[trents]

@Known1, this isn't answering your question but you may find it helpful: https://selfdecode.com/en/pages/non-celiac-gluten-sensitivity-genes/