Am I someone who should do a full gluten challenge first?

[JM12]

I've spent a lot of time looking up to see if I can find a post about a similar situation but haven't had luck finding it.

I've never been 100% gluten free. As of this past Spring, I consumed gluten regularly (maybe a few times per week? I don't believe it was ever daily) and had a lot of the symptoms from it. I made some big health changes going into the summer though and changed to only ate gluten a few times per month (not on purpose, I didn't suspect celiac then. I was just low carb and it coincidentally worked out that way). I did that for 6 months (gluten only a handful of times per month). During that time though, my energy was much better and my poop was actual regular and normal for the most part (maybe TMI, but that was a big deal for me haha). I had some instances though when I was out of town for a weekend and ate out or ate someone else's cooking, that my symptoms were bad. Clearly, every time I was out of town I felt sick. When I started reading more about this was when I realized I likely have celiac or NCGS. My brother is gluten intolerant. I've always had IBS, fatigue problems, and concentration issues, among others that gluten would perfectly explain. I don't have medical insurance and wasn't necessarily planning on a formal gluten challenge, but a self-experiment. For October and November, I upped my gluten consumption to a few times/week and symptoms worsened. November was the worst, and especially Thanksgiving and the few days after. I decided to get a blood test done that I paid out of pocket for on Sat after Thanksgiving. It came back negative (only ttg IGA and IGA). Now, I know that wasn't the full panel. I decided though, I wanted to do the diagnosis process correctly so that I know for sure (if I do have celiac, I want to know to always avoid gluten and not just do "gluten light" while messing up my intestines). Since then, I've done the actual gluten challenge guidelines and I've eaten 2 pieces of bread each day, and wow my symptoms are all the worst they've been in a long time. Clearly, there's a dramatic increase in symptoms since I've eaten gluten daily (fatigue, GI issues, dizzy spells, very dry skin, tingling in hands/feet, etc.). It's really affecting my work performance and life now. The worst part is how bad the brain fog is affecting me. One symptom I have not read a lot about though is heart problems. I've been getting heart palpitations that I haven't had so bad since the Spring (not necessarily saying that's because of celiac disease, I've always had a heart murmur, it's just a lot worse now).

 

My question is this. I want to knock this out ASAP and just go gluten free. The challenge has wrecked havoc on me and I'm ready to be done. If I do the full panel next week, that will give me about 3 weeks of doing the proper gluten challenge. I know a full challenge is 2-3 months, but beforehand, I was never fully gluten free (I was eating gluten a few times/week for 2 months, and beforehand, gluten a few times/month for 6 months). Do you think my results would be accurate if I did the full panel next week, or that I should still do another month of the gluten challenge daily? No matter the result, I very clearly have learned that my body has an issue with gluten, and I feel so relieved that I may have learned the cause for health issues that I haven't been able to figure out in years! It's just that I already spent money on one test, and I would like to only do the test one more time.

[Catusha]

24 minutes ago, JM12 said:

I've spent a lot of time looking up to see if I can find a post about a similar situation but haven't had luck finding it.

I've never been 100% gluten free. As of this past Spring, I consumed gluten regularly (maybe a few times per week? I don't believe it was ever daily) and had a lot of the symptoms from it. I made some big health changes going into the summer though and changed to only ate gluten a few times per month (not on purpose, I didn't suspect celiac then. I was just low carb and it coincidentally worked out that way). I did that for 6 months (gluten only a handful of times per month). During that time though, my energy was much better and my poop was actual regular and normal for the most part (maybe TMI, but that was a big deal for me haha). I had some instances though when I was out of town for a weekend and ate out or ate someone else's cooking, that my symptoms were bad. Clearly, every time I was out of town I felt sick. When I started reading more about this was when I realized I likely have celiac or NCGS. My brother is gluten intolerant. I've always had IBS, fatigue problems, and concentration issues, among others that gluten would perfectly explain. I don't have medical insurance and wasn't necessarily planning on a formal gluten challenge, but a self-experiment. For October and November, I upped my gluten consumption to a few times/week and symptoms worsened. November was the worst, and especially Thanksgiving and the few days after. I decided to get a blood test done that I paid out of pocket for on Sat after Thanksgiving. It came back negative (only ttg IGA and IGA). Now, I know that wasn't the full panel. I decided though, I wanted to do the diagnosis process correctly so that I know for sure (if I do have celiac, I want to know to always avoid gluten and not just do "gluten light" while messing up my intestines). Since then, I've done the actual gluten challenge guidelines and I've eaten 2 pieces of bread each day, and wow my symptoms are all the worst they've been in a long time. Clearly, there's a dramatic increase in symptoms since I've eaten gluten daily (fatigue, GI issues, dizzy spells, very dry skin, tingling in hands/feet, etc.). It's really affecting my work performance and life now. The worst part is how bad the brain fog is affecting me. One symptom I have not read a lot about though is heart problems. I've been getting heart palpitations that I haven't had so bad since the Spring (not necessarily saying that's because of celiac disease, I've always had a heart murmur, it's just a lot worse now).

 

My question is this. I want to knock this out ASAP and just go gluten free. The challenge has wrecked havoc on me and I'm ready to be done. If I do the full panel next week, that will give me about 3 weeks of doing the proper gluten challenge. I know a full challenge is 2-3 months, but beforehand, I was never fully gluten free (I was eating gluten a few times/week for 2 months, and beforehand, gluten a few times/month for 6 months). Do you think my results would be accurate if I did the full panel next week, or that I should still do another month of the gluten challenge daily? No matter the result, I very clearly have learned that my body has an issue with gluten, and I feel so relieved that I may have learned the cause for health issues that I haven't been able to figure out in years! It's just that I already spent money on one test, and I would like to only do the test one more time.

Hi, I've been in a similar situation. I did a blood test but, like you, I hadnt been consuming much gluten (also low carb at the time) so my test also came back negative. I'm now (2 years later) also doing a gluten challenge and I intend to do it for 6 weeks so that a blood test should pick it up. I didn't want to risk the chance of getting a false negative after suffering for so long. I figure the discomfort now wil be worth it in the long term with a definitive answer. 

This is just my experience, you should decide what works for you.

Good luck 

[RMJ]

You know your body doesn’t appreciate gluten and that you will be going gluten free.  I think the question is whether not having an official diagnosis would be detrimental to you.  Sometimes a diagnosis is necessary to convince people to remain gluten free.  Sometimes it is necessary so that college cafeterias, hospitals, etc. will provide you with safe food. If that isn’t a concern you could go gluten free now.  If it is a concern, you should go the full time of the full gluten challenge to be sure results are as accurate as possible.

[Ennis-TX]

Now some places say 8 weeks so you could shoot for that? 12 weeks used to be the normal for testing and many still consider this to be true.
OR you might try just going for the scope and biopsy, much more expensive but only a 2 week challenge.

Some of the biggest benefits to having it officially on your charts would be if you get in a accident and are hospitalized (imagine worst case with a feeding tube and gluten in the mix where you can not talk), or get arrested and incarcerated they will know you need gluten free meals. That is in addition to what RMJ mentioned about colleges etc.

We do have some members that never got the official dia. and stick to it because they could not make it through the gluten challenge, and we have a few member who just have the NCGS dia. but have reactions just as bad if not worse then some celiacs. I myself had a odd issue getting the dia. but got it in the end.

[JM12]

Thank you all for the feedback. I figured I would take the time to follow up now that it's been almost a year.

I ended up going completely gluten free, and I can confidently say it was one of the best decisions I've ever made in my life. I never did a biopsy to look in my intestinal track, and that's okay with me. My mental clarity and my physical health (in most aspects) is like never before and I can't believe that I didn't know this is how I was supposed to feel. I definitely dealt with a recovery time (and temporary symptoms of other food intolerances, possibly a "leaky gut". I had trouble eating high FODMAP for a while but now I don't really get issues with high FODMAP foods. Still can't do gluten at all). 

 

I don't have health insurance so getting an endoscopy for a non-emergency was out of the question for me. I am getting health insurance for this upcoming year because I did just get an official diagnosis of type 1 diabetes after new additional issues that escalated pretty quickly. I've seriously wondered if celiac "triggered" any disposition I had for diabetes, but that's just a conjecture and there's no way I or anyone will never know that one for sure... With insurance next year, I've thought seeing a specialist to discuss my gluten experience. But I've decided I am in no way ever doing a gluten challenge again. My symptoms when I just get cross-contaminated can be pretty rough and I don't see the point in ever putting my health in jeopardy again for something that may or may not confirm a diagnosis. I'm very comfortable never knowing for sure if it's celiac or NCGS, because my lifestyle will stay the same either way. Maybe in the future, we'll have a way of diagnosing celiac in gluten free people without a gluten challenge 🤔