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How do you know that you're healing from celiac disease?


sella

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sella Explorer

I've had undiagnosed celiac disease for decades. As a child, I suffered from constipation and still do. After being on a gluten-free diet for 3 years, I'm not sure if I gained 20 lbs due to having a hysterectomy or gluten-free diet at the same time. I know that women often gain weight during menopause. I also still lose lots of hair like I have in the past, but hormone imbalances also cause hair loss. I still have peeling skin. The only new thing I have noticed is that my liver enzymes have gone down to normal range and I'm not as dizzy as I used to be. 

Some people might reply to get a biopsy. I swallowed the camera instead of biopsy. It showed damage to my small intestine that you get with celiac disease. I don't want to have a biopsy, but if the camera test showed less damage, would that mean I was healing? I know when the damage doesn't heal, you have celaic sprue that is more likely the longer you have had undiagnosed celiac.

The big question I have is the celiac blood test. It has always been abnormal until I went on a gluten-free diet. But I think test results will be noraml if you don't eat gluten to have a reaction?

I haven't stopped eating dairy, though. So, I wonder if that's getting in the way of healing.


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kareng Grand Master
23 hours ago, sella said:

I've had undiagnosed celiac disease for decades. As a child, I suffered from constipation and still do. After being on a gluten-free diet for 3 years, I'm not sure if I gained 20 lbs due to having a hysterectomy or gluten-free diet at the same time. I know that women often gain weight during menopause. I also still lose lots of hair like I have in the past, but hormone imbalances also cause hair loss. I still have peeling skin. The only new thing I have noticed is that my liver enzymes have gone down to normal range and I'm not as dizzy as I used to be. 

Some people might reply to get a biopsy. I swallowed the camera instead of biopsy. It showed damage to my small intestine that you get with celiac disease. I don't want to have a biopsy, but if the camera test showed less damage, would that mean I was healing? I know when the damage doesn't heal, you have celaic sprue that is more likely the longer you have had undiagnosed celiac.

The big question I have is the celiac blood test. It has always been abnormal until I went on a gluten-free diet. But I think test results will be noraml if you don't eat gluten to have a reaction?

I haven't stopped eating dairy, though. So, I wonder if that's getting in the way of healing.

They usually do the endoscopy to get a biospy.  Celiac damage is usually microscopic, to the camera can't see it.  If you have high Celiac antibodies and they can actually see the damage, and you antibodies go down on a gluten-free diet -  then it sounds, to me, like you have Celiac.  Celiac Sprue is the old fashion name for Celiac.  It is the same thing.  

 

Pineapple Newbie

Why am i losing so much hair.  Ive always had thick long hair.  Lots of it. Its coming out every day.  Help someone@

kareng Grand Master
Just now, Pineapple said:

Why am i losing so much hair.  Ive always had thick long hair.  Lots of it. Its coming out every day.  Help someone@

I commented on your other post, too.  Please start your own topic and explain your situation and we can see if we can help.

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    • cristiana
      Thank you for the update.  So interesting to know how things are changing, when I was diagnosed I had very similar blood results but still had to have the endoscopy.  Glad you know where you stand.  As your father has celiac disease you probably already know a lot about it, but do contact us if we can help further.
    • trents
      But isn't it easier to just take a D3 supplement? Is the D light somehow a superior source? Links?
    • Scott Adams
      So the way it should be used is to take it before possible gluten exposure, so right before a meal at a restaurant take 1-2 capsules. Unfortunately taking it 1 hour or more after an exposure is too late.
    • 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:    
    • trents
      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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