Anonym
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Scott Adams reacted to a post in a topic:
Possible Refractory Celiac Disease
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Hi! I am yet to receive results from all of the biopsy samples. However, according to the results I already have the biopsy results are normal (the intestinal villi is of normal height), although there are very minor "villi regeneration changes" (I do not have a medical background so I am not sure of the correct translation to English, and frankly I...
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I figured that a status update would be of interest to those reading this thread. I had the biopsy today. Overall, they took 9 samples, 4 of which are used to test for the refractory variant of celiac disease. The doctor noted that there were no changes visible to eye in the gut, and that the gut looked completely normal to the naked eye. However, the...
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plumbago reacted to a post in a topic:
Possible Refractory Celiac Disease
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The serology results show that they are in the middle of the "normal" range. I have an appointment next week where a doctor explains these results and what they could mean in more detail.
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To the first question, according to the biopsy in the early 2010s and the yearly serology results after that I was responsive at least for 8 years. I dont have the information about the exact Marsh level from the biopsy, but the doctors back then assured me I was healing. To the second, I did not have and do not currently have any symptoms. I had low...
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Thanks! Is it common that celiac gets "worse". Meaning, according to the serology results and biopsies from early 2010s, my body first responded well to a "normal" gluten free diet. Is it possible, that the condition has since gotten worse so that something like milk protein and avenin from oats trigger the same reaction? Is it possible that it even...
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I live in the EU so in my country is the level same 20ppm. The oats and all of the other products I use are either naturally gluten free or branded as such (meaning <20ppm). How do you differentiate <20ppm products from <10ppm? My household is gluten free. I have checked everything including toothpaste and shampoo and so on. If this was any...
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plumbago reacted to a post in a topic:
Possible Refractory Celiac Disease
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Forgot to mention that I found some people mentioning in other conversations that soy or eggs could also be culprits for this. However, I cant of course omit everything from my diet. Would love to hear opinions regarding which ingredients (milk, soy, oats, maize, eggs, etc) are the most likely to cause inflammation and thus higher antibody levels?
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I would say well. My HbA1c has been in the range of 5.5 to 6.1 for the past 10 years.
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Thanks for all the replies. I will now start omitting oats and milk and maize/corn completely from my diet. I hope this would bring both the tTG and EMA tests down to normal range. If not, I think the next step will be steroids and other medication used for RCD. These are my own thoughts and actions. Will wait for the official diagnosis but I hope these...
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The tTG was "stable" in the range from 6.9 to 9 U/ml for the years 2010-2018. Then there was a 3 year break from measuring it. Now, in early 2021, the tTG was 28 U/ml, and 2 months later 42 U/ml. The sudden spike from the "stable" range has lead me to believe that in cant be contributed to type 1 diabetes.
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plumbago reacted to a post in a topic:
Possible Refractory Celiac Disease
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I have thought of this but I havent been able to find any significant changes. All of my foods are labeled as "gluten free" and I live in the Nordics where there are _really_ strict laws around food labelling and inspections, so a mislabeled item or a mistake in the manufacturing process seems really unlikely, although possible.
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A big thanks for your advice! I have been eating oats and milk. Will cut them of from now on. Few questions popped into my mind: 1) Is there any evidence that other ingredients such as soy or maize could trigger the same transglutaminase response? 2) Could the biopsy indicate by itself that omitting ingredients such as milk and oats could be...
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Thank you for your answer! I have a couple of counterpoints to that. I do not have medical education so I might have gotten some things wrong, but isnt the EMA IgA highly specific to gastro intestinal damage? At least in my country, these serology results (both tTG and EMA up ~10-fold) are enough to have a diagnosis to untreated celiac disease. Further...
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Hi! I joined this forum to ask a question regarding refractory celiac disease. Here is my background. I am a 26 year old male. I was diagnosed with asymptous celiac disease with tTG IgA test and biopsy over 15 years ago. These tests were run because multiple of my family members were also confirmed as celiacs. Around the same time I was also diagnosed...