Confused!?!?!?! Maybe I Don't Have Gluten Issues After All. What Do You Think?

[Tim86]

I have never been diagnosed by a doctor. I just had a handful of symptoms (IBS, acid reflux, sleep problems, lack of energy, headaches, memory fog) that seemed like they could be gluten-related, so I decided to go gluten-free. I went gluten-free for almost 4 weeks. The only symptom that improved significantly was the IBS. Nothing else really changed at all.

So I decided to challenge my body with some gluten just to see what happened. Starting Friday night, I consumed quite a bit of gluten (two hamburger buns, four small cookies, several crackers). Saturday at lunch I had two hotdog buns and a slice of apple pie. Then Saturday night I had a footlong Subway sandwich and two cookies. Here I am Sunday morning, and I haven't noticed any response at all!!! I was maybe just a little nauseous on Saturday, but I had a normal BM, and today no nausea. I haven't had any bloating or diarrhea. And here's the kicker...the last two night I probably slept better than I have for several weeks. What's up with that????

All of this seems to contradict what I would expect to see if I truly had problems with gluten, don't you think? Do you have any idea what else could be going on? The most confusing thing is...why did my IBS improve when I went gluten-free? Maybe there was something else I was cutting out of my diet simultaneously, which was actually my IBS trigger (not the gluten).

Please give me your advice. I just don't know what to do next. The gluten-free diet is so hard, and now it would be even harder, because my body seems to be telling me, "gluten is okay". Is it possible to be gluten intolerant, but occasionally your body will accept gluten temporarily? That would be very strange indeed.

[RiceGuy]

Well, a few things come to mind. First, just because every symptom didn't improve on the gluten-free diet, doesn't mean they aren't related to gluten intolerance or Celiac. Many many members here have had to do more than just gluten-free to feel better, especially at first. If your intestines are truly damaged, there will very likely be nutrient deficiencies, which should be addressed with supplements. And the symptoms you describe do fit with typical deficiencies many of us deal with.

For the fatigue, headaches, and brain fog, I'd suggest a sublingual methylcobalamin (active form of B12). This is also vital for maintaining proper sleep cycles, healthy skin, hair, and nails, and so much more. A B-complex will probably be helpful too, along with vitamin D3.

Also, many have reported delayed symptoms, so it might take a few more days, or longer, before symptoms show up. But if and when they do, you may be in for a rough ride. The nausea may be your only immediate symptom.

Since dairy is often a problem at first, you may need to avoid that too, for your other symptoms to improve. Yeah, I know, it isn't fun to contemplate yet another restriction. But it won't necessarily be permanent. The sooner you try, the better your chances may be at fully healing, and being able to add it back in.

Last but not least, the gluten-free diet really isn't difficult, though I do understand that it can, and often does, seem that way at first.

[Crimson]

It could very well be that you do not have an issue with gluten itself. Wheat proteins *I think grain proteins in general* are hard for the body to process for anyone. They're just harder to digest than other foods. It could be that you system just needed a break and now that you've given it that break, you find that you can tolerate them better.

Though you may want to keep a food journal and not go too crazy at first. Make sure you know what you're eating and keep an eye out for any new or revised symptoms.

Just my thoughts. Glad you are well!

[Defkid]

I had a similar problem when I tried a gluten challenge (eating gluten) to get tested. I'd been gluten free for 5 months, at which point all my symptoms cleared. After a week of the challenge I was beginning to question whether gluten really did have an effect on me; apart from bad headaches and some sluggishness, I felt pretty symptom free.

it wasn't till the third week that my system 'crashed', and everything came back, bloating, cramping, joint pains, fogginess, extremem fatigue, moodiness, the D, fatty stools, itchy rash ... (sorry for the detail) By week five my hair was falling out excessivly, as were my eyelashes, i had no energy, my nails were britle, and breaking, nothing I ate stayed for very long (if you know what I mean)..

I have no doubts that everything was related to the re-intorduction to gluten; now the big question is whether it's Celiac or a gluten intolerance?

Anyway, hope this helps.

I have never been diagnosed by a doctor. I just had a handful of symptoms (IBS, acid reflux, sleep problems, lack of energy, headaches, memory fog) that seemed like they could be gluten-related, so I decided to go gluten-free. I went gluten-free for almost 4 weeks. The only symptom that improved significantly was the IBS. Nothing else really changed at all.

So I decided to challenge my body with some gluten just to see what happened. Starting Friday night, I consumed quite a bit of gluten (two hamburger buns, four small cookies, several crackers). Saturday at lunch I had two hotdog buns and a slice of apple pie. Then Saturday night I had a footlong Subway sandwich and two cookies. Here I am Sunday morning, and I haven't noticed any response at all!!! I was maybe just a little nauseous on Saturday, but I had a normal BM, and today no nausea. I haven't had any bloating or diarrhea. And here's the kicker...the last two night I probably slept better than I have for several weeks. What's up with that????

All of this seems to contradict what I would expect to see if I truly had problems with gluten, don't you think? Do you have any idea what else could be going on? The most confusing thing is...why did my IBS improve when I went gluten-free? Maybe there was something else I was cutting out of my diet simultaneously, which was actually my IBS trigger (not the gluten).

Please give me your advice. I just don't know what to do next. The gluten-free diet is so hard, and now it would be even harder, because my body seems to be telling me, "gluten is okay". Is it possible to be gluten intolerant, but occasionally your body will accept gluten temporarily? That would be very strange indeed.

[sbj]

I have never been diagnosed by a doctor . . . Is it possible to be gluten intolerant, but occasionally your body will accept gluten temporarily? That would be very strange indeed.

It is possible to be gluten intolerant and still tolerate gluten. That's not my opinion, that's the opinion of the very well-respected doctor Fasano who is an expert in celiac disease. Dr. Fasano indicates that some gluten intolerants can tolerate 'a piece of pizza.' (This as opposed to celiac disease - if you have celiac disease you can't even have a crumb, ever.)

"Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf.

It's a different story with gluten sensitivity

and allergy.

Some people can't tolerate a crumb

, and

others have a threshold that is such that you can tolerate a piece of pizza

."

This is just one reason why it is so very important to determine whether you have celiac disease, a wheat allergy, or gluten intolerance. I'd suggest you continue a challenge under a doctor's supervision and get some proper testing done to help diagnose your condition.

[gfb1]

It is possible to be gluten intolerant and still tolerate gluten. That's not my opinion, that's the opinion of the very well-respected doctor Fasano who is an expert in celiac disease. Dr. Fasano indicates that some gluten intolerants can tolerate 'a piece of pizza.' (This as opposed to celiac disease - if you have celiac disease you can't even have a crumb, ever.)

"Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf.

It's a different story with gluten sensitivity

and allergy.

Some people can't tolerate a crumb

, and

others have a threshold that is such that you can tolerate a piece of pizza

."

This is just one reason why it is so very important to determine whether you have celiac disease, a wheat allergy, or gluten intolerance. I'd suggest you continue a challenge under a doctor's supervision and get some proper testing done to help diagnose your condition.

i also might add that 'things change'... similar to other allergies, a crumb (or a slice) that is tolerated during early phases of exposure can lead to much greater sensitivity later on. think of it as similar to bee sting allergies... first there is hardly a respo0nse, followed by senstitization, then hypersensitization -- with worsening condition, sometimes leading to anaphylactic shock.

i'm not suggesting that you'll get anaphylaxis... but, rather, the reaction to gluten can worsen with repeated exposure..

another aside; at least in my families experience, the response to gluten among celiacs seems to worsen with age -- requiring less gluten to induce the 2ndry immune reactions typical among celiac patients.

[Mtndog]

I'm thinking that 4 weeks may not be enough for you to really know. The fact that your IBS cleared up is great! That in itself is huge.

The other stuff- memory, brain fog, energy may take longer to come back. Your sleeping well may have been due to the fact that your body was tired from getting glutened.

If you are going to go back on gluten, you might as well get tested by a GI. Can't hurt- might help!