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New To The Site...looking For Advice/input


MsModelSara

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MsModelSara Rookie

Hello everyone. I have never been tested or anything for Celiac deisease or wheat/gluten intolerence or any allergy. I am thinking about doing some kind of test though. I have noticed (especially recently) that whenever I eat carbs or anything with wheat and such I get bloated and crampy. I've also seen bloody stools..I know gross and possibly too much info...sorry! I also can't get enough sleep the night after eating stuff like that either, like yesterday I gave in and ate a bunch of breads and junk foods because I have been working out alot in the gym trying to tone up and slim down a bit (I've been doing a low carb diet sort of thing and was feeling pretty good). I slept about 12 hours lastnight, and I still feel cramps lower than where my tummy is, because I get the cramped feeling slightly in my stomach immediately after eating some things but not enough to cause any kind of real pain. I hate getting gassy after eating some foods..mostly carb related, and most carbs have wheat or gluten in them somewhere I've noticed. and I always feel really bloated in my tummy area, and it's hard to lose weight! even as I am SLOWLY losing ounces here and there and dropping body fat by working out so hard, I haven't lost any inches, and even gained in my tummy area which was really disappointing. I'd like to hear any thoughts from anyone about this. A few weeks ago I even went to Barne's and Nobles to check out diet books and flipped through a gluten free diet book...but ended up going with atkins because it worked for me a few years back.

All of this is just really new to me. I have been looking at some home collection kits that you can mail in to labs and some that even process at home (like the one I found on this site actually through optimum health resource labs) and you can see results in 10 minutes. Maybe this would let me know if I am intolerant to gluten? My Dr. is an imbisil and I don't want to waste my time going to him because he doesn't listen to me. I am hypothyroid and have been officially diaganosed with that since 2005. With my current Dr. I had to go back 3 differenttimes to figure out why I was so completely tired all the time and finally found out i was in recovery from mono back in february, they took so long they missed me being in the active stage of it when i was complaining of sleeping so much. *sigh* I just wish Dr.'s would listen when a patient knows something isn't right with their bodies and take appropriate actions to help. They are so concernced with making money they could care less if someone is sick or needs help. (excuse my rant!)

I'll leave my long post to that for now. I'd really appreciate any inpuit that anyone could give me!!

Thanks so much,

Sara :-)


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MsModelSara Rookie

I forgot to add that I have on and off anemia and I also found out about a Vit. D deficiency when I found out about the mono. Come to find out I was tested for that last year and was supposed to be taking 1,000 IU daily since then and was NEVER told until I asked to be tested for D deficiency because in some people it makes you tired. So I had to get a script for 50,000 IU to take once a week for a month and now just once a month.

It's hard to find a good Dr that accepts Tricare.... Anyone know of any good ones in Central VA???

MySuicidalTurtle Enthusiast

It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

MsModelSara Rookie
It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

ravenwoodglass Mentor
thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

  • 1 year later...
MsModelSara Rookie

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

Ravenwoodglass,

I just now saw that you wrote on here :-). I just sent you a message! A lot has gone on since I originally wrote this post. I have had negative blood tests for Celiac, but it was positive for Hashimoto's Thyroiditis. Stool and gene panel from EnteroLab dx'd me as having active gluten sensitivity that can be more severe due to a double copy of a gluten sensitivity gene (HLA-DQB1 Molecular analysis, Allele 1 0602 and HLA-DQB1 Molecular analysis, Allele 2 0602....Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) ), and immunologic reaction to casein as well as gluten. I do not have either of the two classic "celiac" genes but after reading many of people's stories, those aren't needed to develop Celiac...

I'm still searching and learning, trying to see what is what and trying to figure out the gluten-free diet and see if I can find a dr to retest me for celiac and such. I'm not sure that I'm negative for real. I had the same voice in my head telling me something wasn't right when I set out years ago for my thyroid problem, and it took me 7 years to get my autoimmune dx for that! I didn't give up because I know my body and knew something wasn't right.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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