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Could This Be Celiac?


peacequeen

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peacequeen Newbie

I'm new here and have some questions I need help answering. I'm going to be very specific with my problem, I hope I don't offend anyone or gross anyone out. I'm in alot of pain tonight and I really need some help. I'm a 46 year old female. I have myasthenia gravis and thyroid disease just to name a couple of the conditions I have. I included these because they are autoimmune, I know sometimes autoimmune conditions can overlap. I've been having alot of pain and discomfort in my abdomen for the past few months, everytime I eat. I constantly feel bloated, my upper abdomen is distended (always) and I feel like I have a brick under my ribs. I also burp and belch alot and my stomach makes alot of noise at times. I also get pain in my lower stomach at times but mostly upper. I've had strange bowel movements for the past few months. My bowel movements smell the bathroom up like sulfer. I was so constipated and now I get diarrhea alot. Tonight it was a little different, it was large, hard and solid then small bits of stool then came diarrhea. It was all different color and texture. Some of it looked fatty. It had that same foul odor like sulfer and there was food that had not been broken down and oil floating in the toilet. I have been getting a spot here or there in my mouth like a cold sore every couple of weeks, I have blister like rash on my elbows that itch really bad and I'm having a hard time getting it to go away. I've been trying to pay attention to certain foods but anything is making me feel sick now but it is worse when I eat stuff like pizza, sandwiches, fast food, etc. I'm just wondering if this sounds anything like celiac or crohn's. I've had IBS for a long time and this is nothing like anything I've experienced with that. It's causing problems all day long, it never lets up. I'm overweight but I've lost about 10 pounds in the past couple weeks and I'm not trying. Any advice would be so appreciated.


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rgarton Contributor

It really does sound like Celiac! I'm sure you've researched it enough already but all those symptoms point towards Celiac indeed. I was chronically constipated then all of a sudden the complete opposite it was bizzarre and upsetting. If you can, go and get a blood test asap, espeically looking for Celiacs, or any other allergys. Keep a food diary and take it to a dietician as well, record BM's as well with it. If in doubt of all this just cut gluten and wheat out and see what happens! Also cut out Dairy at first too. Good luck!

CDFAMILY Rookie

Hi Peacequeen,

You sound a lot like me. I was dx with MG about a year before I was dx with Celiac Disease. I had many neurological problems that mimicked MG ALS MS and Parkinsons. I first started with Low white counts (Leucopenia) then ITP (Low Platelets). Then I was dxd with Fibromyalgia. These diagnoses stayed around for 14 years before things went downhill. In about 2002 I mentioned having more gassy problems and had tried all kinds of beano type things. My doctor said there was nothing she could do if they didnt work. Then I started going 3 or 4 times a day and then having emergencies but thinking this was because of all the childbirth rips. Then double vision started in 2003 and my body just started to fall apart. I had muscle wasting, extreme fatigue, serious brain fog, major weakness, high blood pressure and heart rate caused by autonomic issues all kinds of different neuropathies. I then was dx with ocular MG although I had more trouble with body weakness. After being dx I did find a diet on the internet that says it can possibly cure MG or at least make it better. I copied it and filed it. Meanwhile someone told me to look into Celiac. I did research and found and I should have been tested years ago since I have 2 brothers with type one diabetes.

All my blood work came back very positive except for Gliadin IgG and Ttg IgG. (I am thinking I am possibly IgG deficient). My biopsy showed scallops and blunting but not total atrophy even though I had a positive EMA test!(A year before the celiac blood tests,I was dx with b12 deficiency and took mega B12 and Bcomplex plus folic acid and I have a theory that this helps repair the intestines)

I started the diet but made the mistake of eating a lot of the processed gluten free food at first. Finally I smartened up and got rid of the processed food, dairy and sugar and eat mostly paleo and finally feel better. I have just some minor weakness left but rarely have a droopy face anymore. So, looking back at the diet for MG I found on the internet, well surprise, surprise it is basically a gluten free diet!!

So, I would not go gluten free until tested. Go to the doctor armed with the correct blood tests you need. Ask to see the test order so you know what they are testing. You do not need to go to a gastro for this. Your regular MD or neurologist should be able to run the tests for you. But dont be surprised if your neuro is not up with Celiac and Autoimmune

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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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