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Permanent Symptoms?


SB3619

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SB3619 Newbie

I do not personally have celiac disease but my husband does. I am writing on his behalf today.

He was diagnosed with celiac disease in 2005 but didn't truly eat gluten-free (assumed hard-shell tacos from Taco Bell were safe, etc.) until 2009. I won't go into details but I am also gluten-free now, have been for a few years, so there is not gluten in our house and therefore no cross-contamination there.

My husband has never truly felt "himself" again. Some days he feels fine and some days he's exhausted after eating, sometimes even ravenously hungry right after eating. He does definitely have hypoglycemia issues but this goes beyond hypoglycemia.

Even when we keep a very accurate food journal for him we can honestly find no patterns, no rhyme or reason to his symptoms. He also seems to lose and gain weight quickly (might lose four pounds after several days of eating well-balance, high calorie meals which we've even started tracking, then go back to his normal weight without doing anything different) and I'm wondering if that is malabsorption.

 

Is this common? It seems to me like this kind of strange problem should have gone away now that it's been almost four years of being gluten-free. He has certainly seen many other symptoms disappear but I believe ALL of the other symptoms disappeared within a few days to six months of eating gluten-free. What gives? He's been tested for diabetes and other food allergies, although not recently.


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shadowicewolf Proficient

Has his thyroid been checked? That could possibly cause this.

1desperateladysaved Proficient

I have similar issues with weight gain.  I think mine is do to my adrenal glands being taxed.  I am recently on an herbal formula to support adrenals, but it is too early to say what all it does.

 

You can check adrenal glands by taking blood pressure while lying down.  Then stand up and take it again.  It should rise somewhat when one stands up.  If it goes down after standing it is showing adrenals are having a problem.

nvsmom Community Regular

I was going to sugest thyroid problems too. Some people, whose thyroid is under autoimmune attack, will swing from a hyper state (jittery, shakey, heart palps, affected sleep, fatigued or too much energy, unusual weight gain or loss and increased appetite) to hypo (fatigue, dry skin and hair, hair loss, cold, weight gain, constipation).

 

If he does get his thyroid checked (TSH, TPO Ab, TSI, Free T4 and Free T3), make sure he gets copies of the lab results because doctors tend to call labs normal and discount a patient's symptoms when they shouldn't. Research his results as a double check. KWIM?

 

Are you sure he is gluten-free? 100% gluten-free? I tend to get hypoglycemic when I've eaten gluten. It affects my appetite too. I too tend to gain weight on gluten and lose it easily if I cut out my carbs. minute amounts of gluten can do that to me so maybe he is being contaminated or eating gluten out of the house?

 

Best wishes, and good luck finding answers.

twe0708 Community Regular

I get hypoglycemic if I have too many carbs in my meal.  I need to make sure I have more protein than carbs.  

Celiac Mindwarp Community Regular

Has he tried an elimination diet, and not just testing for intolerance?

I found I have similar reactions to gluten from dairy and soy, for example, and have resolved many symptoms that I thought were cross contamination since removing them from my diet.

Good luck. Read around the site, something might ring a bell...

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    • trents
      But isn't it easier to just take a D3 supplement? Is the D light somehow a superior source? Links?
    • Scott Adams
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    • Scott Adams
      Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
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      Welcome to the forum, @Ryangf! If you don't have celiac disease you could still have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS does not damage the lining of the small bowel as does celiac disease. Some experts feel NCGS can be a precursor to the development of celiac disease. NCGS is 10x more common than celiac disease. There is no test for it. A diagnosis of NCGS is arrived at by first ruling out celiac disease by formal testing. At the end of the day the antidote for both is the same, namely, life-long abstinence from gluten. Yes, corn is a common cross-reactor with gluten for some celiacs. So are oats, soy, eggs and dairy.  I have concern with your possible exposure to wheat flour dust during your culinary training. It gets in the air, you breathe it in, it gets trapped in the mucous of your mouth and airway and winds up in your gut. If you decide to go forward wit the "gluten challenge" for formal celiac disease testing, aim for the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for four weeks leading up to the day of either the blood draw or the endoscopy/biopsy.
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