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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Recent Activity
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- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Virus, celiac disease or both?
There are plenty of people with celiac disease walking around who are largely asymptomatic. I was one of them. We call them "silent celiacs" They don't seem to have GI distress or maybe it's so minor and infrequent it's not really noticeable. They can be in that state for years until the damage to the villi progresses to a critical point or they begin to... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Virus, celiac disease or both?
Hi @trents! I feel like relying to a super star with as much of your content I’ve read. Lol. I definitely don’t disagree with you but I think I’m so chicken about another EDG. What do you think about the EMA-IgA test? I’ve read so much at this point I don’t know if I trust anything completely. Even if everything said yes I would s... -
- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3
Virus, celiac disease or both?
Welcome to the forum, @Shining My Light! It's good to be able to engage a secret "friend". I know you don't want to hear this, but with a positive tTG-IGA, a positive tTG-IGG and off and on GI distress, your next logical step would be to get an endoscopy done with a biopsy of the small bowel lining (duodenum and duodenum bulb) to check for villous atrophy... -
- knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease34Supplements for those Diagnosed with Celiac Disease
It's not rocket science, like @Scott Adams says! My best advice is not to take Thiamine Mononitrate because the body doesn't absorb it well (only 30% is absorbed, less than that can be utilized). Thiamine Mononitrate is used in many multivitamin supplements because it's cheap and shelf stable, meaning it won't break down in storage on a store shelf... -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease29Refractory Celiac disease - what to do
I'm also already struggling to get the motivation to eat because of the anxiety around food, not being able to eat the things that I am craving, and the amount of time and effort that goes into preparing every single meal, so I worry that increasing the restriction will just make it harder and harder to eat. Thank you all for all the suggestions and...
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There are plenty of people with celiac disease walking around who are largely asymptomatic. I was one of them. We call them "silent celiacs" They don't seem to have GI distress or maybe it's so minor and infrequent it's not really noticeable. They can be in that state for years until the damage to the villi progresses to a critical point or they begin to develop other health issues that they didn't understand were related to celiac disease. With me, I had very little GI distress but my liver enzymes were elevated. Took 13 years to get that run down and connected to celiac disease. Soon as I adopted the gluten free diet, the liver enzymes normalized. I am blessed that no permanent damage seems to have been done to my liver. Long term, unaddressed (with a gluten free diet) celiac disease can damage other body systems besides the small bowel. Another example is neurological damage that is often not reversible. The EMA was the first blood antibody test to be developed for celiac disease. It has largely been replaced by the tTG-IGA. The EMA is more expensive to run as it requires the use of organ tissue I believe. The tTG-IGA is just as effective. "everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac." Huh?
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By Shining My Light · Posted
Hi @trents! I feel like relying to a super star with as much of your content I’ve read. Lol. I definitely don’t disagree with you but I think I’m so chicken about another EDG. What do you think about the EMA-IgA test? I’ve read so much at this point I don’t know if I trust anything completely. Even if everything said yes I would still wonder if it was really something else. It really does seem like the possibilities are endless with all of these tests, etc. and then I think I would be extremely frustrated if the EGD came back normal and then I would still struggle whether I should really be eating gluten or not. i’m also wondering how many people I’ve had the same levels I’ve had and it not be celiac I’ve not ran across anyone like that everyone I know that has a gluten intolerance or celiac cannot tolerate gluten at all have tested negative for celiac. I would love to have someone who was a-symptomatic and was confirmed celiac that had an improvement. I’ve had several people tell me if I have no symptoms then I shouldn’t care. I would like to live in that ignorance but every time I want cake it makes me wonder and it’s not a good feeling. -
Welcome to the forum, @Shining My Light! It's good to be able to engage a secret "friend". I know you don't want to hear this, but with a positive tTG-IGA, a positive tTG-IGG and off and on GI distress, your next logical step would be to get an endoscopy done with a biopsy of the small bowel lining (duodenum and duodenum bulb) to check for villous atrophy, the hallmark of celiac disease. Sounds like you have had upper GIs done in the past but you do not specifically mention having been biopsied for villous atrophy. Without this step, you will not be able to pin things down and it will likely be difficult to stay on the gluten free bandwagon because of the human tendency to rationalize.
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By knitty kitty · Posted
It's not rocket science, like @Scott Adams says! My best advice is not to take Thiamine Mononitrate because the body doesn't absorb it well (only 30% is absorbed, less than that can be utilized). Thiamine Mononitrate is used in many multivitamin supplements because it's cheap and shelf stable, meaning it won't break down in storage on a store shelf, or when exposed to heat or light. This stability makes it fairly useless to the body, but lines the pockets of the manufacturer. Use other forms if Thiamine Vitamin B1 like Thiamine Hydrochloride, or Benfotiamine, or TTFD (tetrahydrofurfuryl disulfide). Benfotiamine has been scientifically shown to promote intestinal healing. TTFD is great for neurological symptoms. Thiamine has no toxicity limit. It's okay to take these forms of thiamine along with the B Complex which already contains thiamine. I prefer taking a B Complex and a multiple mineral supplements to taking a multivitamin. I prefer taking a B Complex twice a day because taking it twice gives my digestive system better opportunities to absorb those essential vitamins. The B vitamins are chemical compounds that the body cannot make itself and must get from the diet and supplements. I like the activated forms of B vitamins because this helps with the MTHFR mutation that frequently occurs with Celiac Disease. The B vitamins are water soluble so any excess is easily excreted. Niacin B3 and Pyridoxine B6 does have upper limits. Niacin over 500 mg a day has been used in medicine to lower bad cholesterol under doctor's guidance for decades. Pyridoxine B6 above 500 mg a day can cause toxicity symptoms in some people with a rare genetic variation. -
I'm also already struggling to get the motivation to eat because of the anxiety around food, not being able to eat the things that I am craving, and the amount of time and effort that goes into preparing every single meal, so I worry that increasing the restriction will just make it harder and harder to eat. Thank you all for all the suggestions and listening to my concerns, it's helped me feel like there are more options and feel understood, at a time when I am feeling pretty hopeless and stuck.
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