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Continued "issues" On Gluten-Free Diet...

JustAGirl79

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JustAGirl79 Apprentice
JustAGirl79
Posted

I was diagnosed via bloodwork in April 2009 and a biopsy in June 2009 confirmed the diagnosis. I immediately went gluten-free and felt much better. Had a lactose tolerance tests and I passed that, no lactose intolerance. I also almost immediately got pregnant with my second child. Throughout pregnancy, I had some issues - but being pregnant meant I was never sure if I felt crappy because of the celiac or because of the pregnancy.

I continued to see my GI doctor for routine blood tests every six months or so. Baby was born in March 2010 and I was feeling quite a bit better. Bloodwork in June 2010 showed no evidence of celiac, i.e. I was (correctly) following the gluten-free diet. In the last 4 or 5 months, though, I've started to feel poorly again. Not nearly as bad as before being diagnosed, but certainly not 100%. Routine bloodwork in November 2010 showed a low positive for celiac so at some point, I ingested some gluten. Small bowel follow-through at the time was normal. Plan was to repeat bloodwork in March.

Called my doctor in January as I was feeling increasingly poorly. Not actual diarrhea, but very loose stools, LOTS of mucus, bloating, all my stools have lots of undigested food in them, some minor cramping etc., etc. Every morning I could easily go to the washroom 4 or 5 times in a 2 or 3 hour period and then I'm somewhat fine for the rest of the day. She did another set of bloodwork and everything showed up "normal," no signs of gluten in my system. I should mention the week I had this set of bloodwork done was the worst I had felt in a long time...but no gluten in my system at the time.

Colonoscopy was done last week. My GI doc said everything "looked" normal, but she took some tissue samples for biopsy. I'll get those results next week.

In the meantime, I turn to the experts on here for input on what's going on...am I going to spend the rest of my life feeling this way even on a gluten-free diet? Assuming the colonoscopy is as normal as she thinks it was, what's going on?

I eat fairly healthy. I've lost all of my baby weight and I am at a healthy weight. I don't smoke, I drink moderately.

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Happyw5 Explorer
Happyw5
Posted

Could it be a new allergy? I actually got a different allergy after each of my five children. Peanuts, hazlenut, spinach, wheat, dairy, eggs, grapes and raisins, and soy... I always new it was a new allergy because I would get very tired after eating (anything) and I would go get a cbc done, my eosiniphil count was always extremely high and then they would figure out which new food I was reacting to! Good Luck, I have only been gluten free for about 5 weeks and already feel much better. I still have a lot of digestive issues so I think I am narrowing it down to sesame seeds...We will see...Good Luck it's no fun feeling icky with a new baby!

glutenfreesavvy Rookie
glutenfreesavvy
Posted

Justagirl,

I'm so sorry to hear about the nagging symptoms. Is your entire house gluten free? I'm so sensitive that I cannot eat food prepared in a gluten cookin' kitchen. :) Also, several years ago, I began to feel glutened a lot & I finally realized my shampoo was the culprit. I felt soo silly...I just thought I was a serious label reader. :blink:

I hope you find the answer soon! I'm a mom of 4 & know how horrible it is to feel bad & have little ones to take care of.

warmly,

Faydra

T.H. Community Regular
T.H.
Posted

What I've seen as potential problems with this type of issue:

1) possibly you've become more sensitive to gluten. Some celiacs seem to start having reactions to gluten that previously didn't bother them. Your tests can still look good with you having symptoms, by the way. Dropping processed food for a bit to see if it helps can help track it down.

2) You could have a previously undiagnosed food intolerance/sensitivity/allergy. A lot of celiacs start having symptoms from other foods after going gluten free for a bit. The most common foods I've seen issues with are: dairy (could be allergy, not just intolerance), soy, nightshades, and other grains, especially corn.

3) You could be getting gluten exposure that you're not accounting for. Usually, this tends to be from non-food sources. construction, kissing a partner who's been eating gluten lately, or the shampoo (it cant get into your mouth during rinsing) mentioned above. That sort of thing.

4) Maybe some of your staple foods' companies have changed their practices/added gluten foods on the same lines, etc... and have more gluten cc issues right now. That happened to me, where I was eating one brand of ground meat that suddenly started making me sick. Turns out the company started making sausage with wheat in it, and it shared the same grinder with the regular ground meat and cc'd it. :(

5) You could have developed another sensitivity of some kind, like fructose malabsorption, too.

Getting your diet kind of down to the basics, and keeping a food journal of your foods (including brand names!) and your reactions might help track down why you're sick.

hoping that you find the answer soon.

dilettantesteph Collaborator
dilettantesteph
Posted

Gluten contamination of gluten free grains have been found to be an issue in a study by Tricia Thompson. Why don't you try going grain free for a couple of weeks and see if that helps. I sort (and remove gluten grains) and wash whole grain before grinding and eating. I'm sensitive to very low levels of gluten.

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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