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Mph1213

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Mph1213 Newbie
Mph1213
Posted

Hello everyone. Within the last 2 months I have been diagnosed with celiac disease by my endocrinologist who I see for Graves' disease. Upon learning that my blood tests came back sky high for celiac disease, I came back to speak with my endocrinologist on what to do next. They told me to of course begin a gluten free diet. They said I would not need an endoscopy or any follow up labs or appointments because I "will know if I am getting better from my symptoms". Does this sound like correct advice? Anyone else I've seen on here has had an endoscopy done to confirm and then does a follow up plan. My endo. also said once 'symptoms' are under control that I can eat gluten every once in a while because it doesn't make me physically sick but once again everything I see online says the opposite. I feel like I'm blindly being leaded, please advise!! I hate everything about this disease and then to depend on how I feel to know if I am cured just seems crazy as I feel different every day (am on HRT and anti-thyroid meds). Thank you for your time to read this :) you all are the best on here, always so helpful! 

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cyclinglady Grand Master
cyclinglady
Posted
16 minutes ago, Mph1213 said:

Hello everyone. Within the last 2 months I have been diagnosed with celiac disease by my endocrinologist who I see for Graves' disease. Upon learning that my blood tests came back sky high for celiac disease, I came back to speak with my endocrinologist on what to do next. They told me to of course begin a gluten free diet. They said I would not need an endoscopy or any follow up labs or appointments because I "will know if I am getting better from my symptoms". Does this sound like correct advice? Anyone else I've seen on here has had an endoscopy done to confirm and then does a follow up plan. My endo. also said once 'symptoms' are under control that I can eat gluten every once in a while because it doesn't make me physically sick but once again everything I see online says the opposite. I feel like I'm blindly being leaded, please advise!! I hate everything about this disease and then to depend on how I feel to know if I am cured just seems crazy as I feel different every day (am on HRT and anti-thyroid meds). Thank you for your time to read this :) you all are the best on here, always so helpful! 

Run and find another doctor!  Your endo obviously is not celiac savvy!  If you have celiac disease you can never have gluten again.  Avoiding gluten is the ONLY known treatment for celiac disease.  Even a tiny crumb can harm a celiac by setting off a autoimmune flare-up.  I would also find a new  endo who might handle your Grave’s treatment better.  If he can not take the time to read Dr. Google and learn about celiac disease, I doubt he is keeping up in his own specialty.  

Some celiacs are asymptomatic.  So, you might not be able determine if you are healing by how you feel alone.  

Learn more about testing:

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Learn more about follow care for a celiac:

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Ennis-TX Grand Master
Ennis-TX
Posted

Your doctor is a complete quack, you need to get another like what cycling lady said. Celiac can be managed and you can heal but it requires a strict gluten free diet. Crumbs, residue, cross contamination from shared utensils and cookware can cause your antibodies to flare up for weeks and start damaging your again.

We do suggest a whole foods only diet for the first few weeks to boost healing and get you on the right track. Check out the newbie 101 section and I compiled a list of gluten free food alternatives. You might want to watch out and remove dairy and oats also as many people also have issues with these, you can try reintroducing them at a later point in time.

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

desirun Explorer
desirun
Posted

Ditto above. Run for the hills. Find a new doctor. There is nothing more toxic than a physician treating an illness he/she is not versed in and/or making up an unfounded treatment plan!  Good job following your gut, something IS way off!

 

Mph1213 Newbie
Mph1213
Posted
  • Author

You all are so amazing. Thank you so very much for the responses. I always feel 'weird' questioning a doctors orders but this just did not sit right with me. I will be contacting another doctor asap now that I know what I was told was not correct. Thank you all so much again! 

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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