Celiac Disease - gluten free and no improvement

Posted by Sillyred @sillyred, Nov 19, 2012

I am writing on behalf of my husband. He is 43 and recently diagnosed with Celiac Disease. He has been gluten, soy, dairy free for 60 days.

He no longer has stomach pain or diarrhea. He now has disorientation, head fog, gas and bloating after every meal along with head aches. We do not believe he is being glutened. Just before bowel movements, he feels very ill.

Most Celiacs feel better from being gluten free, he actually feels worse. Any insight would be welcomed. And prayers are always welcome!

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Has he tried eating small meals? Keep notes of what he eats every day and every meals. See if certain meals of the days make him feel worse or better. Avoid the foods that might make him feel ill. At the present time, eat warm foods and stop eating salad for a few days and see if he feels better. Eat slowly. Don’t drink cold liquids with foods. From daily notes of what works and don’t work, he might find foods that agree with the stomach. Be sure to see the GI doctor again and report the sickness. Feel better.

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Sillyred:
do not lose faith and fret! my wife was in a very similar boat. it took us about 1 year and 3 months to get her to start feeling well again. likely your husband has had these symptoms for ever and thus celiac for that long. it will take time for him to recover. best things that helped my wife were to find multivitamins, probiotic, rest copiously, go completely gluten free in our house, and so much more that i will tell you in a subsequent post. it takes time for the body to recover. everyone has different experiences as well. and science only knows so much. they say that you can’t get sick from gluten if breathed in, well we believe you can. i dont care how many PHDs say you can, cause my wife does. so listen to your body. you need to give up eating out at any places that are “gluten free” cause they likely are not. most processed food labeled “gluten free” is not gluten free enough. ok more later. stay strong and positive. it will get better in time.

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Is it possible he may be sensitive to more than just gluten? For example, in addition to being gluten sensitive I am also extremely sensitive to corn and corn by-products which are in most processed food. Sometimes when we go off gluten we start eating more of other items (rice, corn, potatoes) and if we have a problem with some of those we can have continuned or other challenges. I am praying!!! 🙂

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@godandliberty

Sillyred:
do not lose faith and fret! my wife was in a very similar boat. it took us about 1 year and 3 months to get her to start feeling well again. likely your husband has had these symptoms for ever and thus celiac for that long. it will take time for him to recover. best things that helped my wife were to find multivitamins, probiotic, rest copiously, go completely gluten free in our house, and so much more that i will tell you in a subsequent post. it takes time for the body to recover. everyone has different experiences as well. and science only knows so much. they say that you can’t get sick from gluten if breathed in, well we believe you can. i dont care how many PHDs say you can, cause my wife does. so listen to your body. you need to give up eating out at any places that are “gluten free” cause they likely are not. most processed food labeled “gluten free” is not gluten free enough. ok more later. stay strong and positive. it will get better in time.

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What probiotic is good?

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Oh my, that sounds so hard for both of you! Before I was diagnosed with Celiac, I had no digestive symptoms, inexplicable weight loss is what lead to bloodwork and an endoscopy. After I went gluten-free, I suddenly had tons of symptoms! It took me about six months of recovery before I felt even halfway normal. My time was mostly spent sourcing safe food, preparing that food, eating that food, and sleeping.

Dairy and soy are often problematic so those were good to eliminate but if that isn't helping, I'd recommend going to a registered dietician to explore an elimination diet to look for other possible bad actors. There's hope – I had a long list of foods that were problematic for me initially and most of them I can eat again now.

You might also want to consider investing in a Nima gluten sensor, it allows you to test for cross-contamination. It isn't perfect as there are some foods it can't test but it was a lifesaver for me because I realized I was getting exposed to gluten every time I went to a restaurant that supposedly was celiac-safe. I'm asymptomatic again now so I can't count on symptoms to tell me whether a restaurant is safe or not.

Sending best wishes to you and your husband.

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Where do you buy a Nima gluten sensor? I eat out and consume gluten-free but wonder if it's safe. I have Celiac and Microscopic Colitis. Celiac is easy compared to MC, which is a monster. My mom was too busy to notice and my father too self-absorbed to care. I need help

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Could be FODMAPS, fructans, and fructose, and not the gluten or in addition to gluten. Has he had his B12, methylmalonic acid and homocysteine levels checked? Low B12, if he has IBS or MC or celiac, can cause the disorientation and brain fog.

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@oakbourne

Where do you buy a Nima gluten sensor? I eat out and consume gluten-free but wonder if it's safe. I have Celiac and Microscopic Colitis. Celiac is easy compared to MC, which is a monster. My mom was too busy to notice and my father too self-absorbed to care. I need help

Jump to this post

Here’s a link: https://nimapartners.com/ The company has fairly recently been restarted under new ownership and there have been some wobbles along the way but they seem better now.

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