My Story (and questions along the way)

[Ben.D]

6-7 years ago, my energy started to decline and general fatigue set in. (I was only in my mid-20s) It worsened until I found that anytime I did something strenuous, the following day I would have a terrible brain fog headache and fatigue. Working a physical job was not possible. Since I had zero digestive symptoms, it took me a long time to finally try going gluten free. When I did, my symptoms cleared within a couple weeks and I had energy again! This was 4 years ago. Previously, I had gone to a doctor about my symptoms and he performed a barrage of tests yet asked absolutely nothing about diet and did not test for celiac. When I returned with my self-diagnosis to get an official test, he said, "Oh. Ok. I'll test you for celiac. Go back on gluten for one week and then I'll take a blood test." First big question: Is one week even remotely long enough?? I doubted him at the time so I did two weeks, each day eating at least two pieces of bread. Is that even enough for a proper test? The results were negative. And now that I've been off gluten so long, I can't imagine going back on for another test. Is it true that when you go off gluten, you become more and more sensitive to it?

My symptoms seem fairly unique. Nothing but fatigue and that horrendous headache that feels like the inner pathways of my brain are clogged with garbage and nothing soothes it except time and a night of sleep (it's a very distinct headache that is hard to describe but easy to identify). But here is the bizarre thing: while being gluten free, anytime I am exposed to gluten, my symptoms occur exactly *five days later*. I have tracked this repeatedly over four years. The only thing that sometimes makes the reaction time quicker is intense physical labor, which I also track. Has anyone experienced something like this? A delayed reaction of five days that slams you in the brain? Is there any research about gluten effects on the brain? It feels like damage is being done. I want to know how important it is that I avoid exposure, besides how unpleasant it is.

Getting back to the sensitivity thing. Last year, I had a relapse. Nothing changed in my diet, but slowly the symptoms came back. I took out everything that might be contaminated, thinking my sensitivity had suddenly increased. I felt better. Then I started adding things back in, one thing per week since my reaction time is five days. The culprit? Oats. So I tried gluten-free certified organic oats. Same problem!! That was a big disappointment. So now I am oat free. Is my body reacting the same way to Avenin (just a lot less severe)? I feel like my sensitivity is continuing to increase and I'm worried I'm going to have to lockdown the house and take away my wife's bread! I already use a separate toaster, separate condiments, separate peanut butter etc, and there is no wheat flour in the house. I'm a total nuisance when instructing people who want to cook me a meal. But these symptoms ruin my day and I'm about to enter another strenuous job. It definitely happens occasionally that I can't trace the symptoms back to anything sketchy.

I know this is a very general story I'm sharing, but any specific thoughts? Thanks in advance!

[trents]

Q: "Is one week even remotely long enough??"

A: No way!

Q: "Is it true that when you go off gluten, you become more and more sensitive to it?

A: Typically, yes. Reactions are typically more vigorous. But there will still be great individual variation in reaction to gluten exposure post gluten free diet. I develop intractably vomiting for several hours, severe gut cramps followed by several hours of diarrhea. Before diagnosis, very mild GI distress.

Q: "But here is the bizarre thing: while being gluten free, anytime I am exposed to gluten, my symptoms occur exactly *five days later*."

A: Unusual for certain.

Q: "Is my body reacting the same way to Avenin (just a lot less severe)?"

A: Most likely. Oats are a common cross reaction food for celiacs.

It is also possible you may have NCGS (Non Celiac Gluten Sensitivity). Without testing to rule out celiac disease, it would be difficult to distinguish those because they share many of the same symptoms. NCGS is 10x more common than celiac disease and your delayed reaction to gluten of literally days makes me wonder.

[knitty kitty]

@Ben.D,

Welcome to the forum!  

I'm going to ask about your diet.  What did a typical day's food intake look like prior to symptoms 6-7 years ago?

What does your diet include now?

What foods are problematic for you?  

Are you a vegetarian?

[Wheatwacked]

I had to take 30 mg prednisone to function until I started GFD in order to even get out of bed.  On GFD I'm down to 5-10 a day for maintenance, depending on stress and activity levels. Those first years on it caused Secondary Adrenal Insufficiency so I may have to continue for life. 

There are many other non classic symptoms to Celiac Disease.  Vitamin and mineral deficiencies abound in Celiac Disease due to villi damage at first and food avoidance even after starting GFD gluten free diet. Here are links to those symptoms and to a brief discussion of deficiencies and the symptoms they can cause. Also a list of foods to eliminate possible hidden contamination issues. Vitamin D and Choline and Thiamine are common in neurilogical symptoms and fixing them will likely show quick improvement. That is why looking at your current diet, as Knitty Kitty suggested, is super important.

Products allowed/disallowed in the Gluten Contamination Elimination Diet

 

 

[MichelleLee]

I had a similar experience with a delayed reaction time. I’ve been gluten free since mid-2021. I noticed a difference almost immediately so I continued on with my new diet without seeking testing.

Fast forward to the end of February of this year, I ordered a gluten-free pizza from a restaurant that is not strictly gluten-free. Almost a full week went by and suddenly I could barely get out of bed. Extreme fatigue and digestive problems like I’ve never had before. By week two I went to the hospital because the pain was so intense and unbearable. After a CT scan I was then scheduled for an endoscopy and colonoscopy. I began eating gluten again the 4 weeks leading up to my appointment because I thought “well if my stomach hurts this bad, maybe it was never gluten”. My endoscopy came back with suggestive celiac and the blood test confirmed. I’m now wondering if I encountered cross contamination for the first time since giving it up.

Anyways, I certainly had the same experience with the delayed reaction!

[Scott Adams]

Eating a restaurants is always risky, even if they offer a gluten-free menu or version of a dish.

 

 

[Ben.D]

Thanks everyone for your thoughtful and informative responses! To answer the diet question...

I was vegetarian for about 4 years leading up to my first symptoms, and after struggling for a couple years, I reintroduced meat, hoping that additional protein would help give me energy and allow me to do strenuous work without symptoms. I've eaten meat ever since going back on it beginning of 2017. After the addition of meat didn't really have much effect, I also looked into iron and B12 to make sure I wasn't deficient in either. And then when my doctor first performed that barrage of tests, I would assume he looked for any deficiencies in nutrients and vitamins etc; he didn't inform me of any.

My diet has always been quite well-rounded and wholesome. Tons of vegetables, moderate to low amounts of meat, dairy, and eggs, my main grain is obviously rice now so rice pastas, bread, baked goods, etc.. I do eat a fair amount of sugar (though probably not compared with many!) And I don't drink coffee or alcohol.

After reading more, I think my sensitivity is probably fairly average, though likely increasing. I do eat out at restaurants occasionally, and I do eat some items that are on the danger list for cross-contamination. But I track everything and wait five days between questionable items. Doing so has allowed me to identify the things that don't give me symptoms and the things that do. But I wonder now if damage is done even with no symptoms. There is no way to know without some kind of testing. My uncle (not blood related) was recently diagnosed with celiac and he was completely asymptomatic. They didn't discover it until he had a cracked vertebrae from osteoporosis. Now he gets frequent biopsies to inspect his intestines because that is the only way to tell if he is getting better. But I think I'm out of luck for that kind of testing since I don't have a positive on the antibody test. And if I don't have celiac, then nobody will have a clue if damage is being done during whatever is going on in my body. Well, I think I will continue as I am and adapt as needed if symptoms come more often.

[trents]

Yes, it is common for celiacs to not have symptoms or perhaps very mild ones while damage to the small bowel villi or other body systems is going on. We call them "silent" celiacs. I was one. Then it typically comes all crashing down at some point in time.