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Several Celiac Symptoms...could Be Lifelong - Please Advise!


Kitt1027

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Kitt1027 Rookie

Hello all! I am very new to this site. I've been hearing about Celiac for a couple of years now, but before that didn't know it existed. When I first heard of it and the symptoms, I suspected that I had it, but didn't do anything about it. Honestly, I think that if I do have it, I have had it since I was a very young child, if not from birth. Therefore, I


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ShayFL Enthusiast

Any difference after 2 days gluten-free?

Are you 100% gluten-free? i.e. changed out your scratched pans, new cutting boards, cleaned your kitchen thoroughly. Made sure your haircare/cosmetics/creams/toothpaste/floss, etc. are gluten-free??

Not eating out? Not eating anything without checking for gluten-free status? Unless simple foods like meat, veggies, fruits.

Yes, you sound like you could be either Celiac or Gluten Intolerant. Same cure for both which is the gluten-free diet.

If you want an official Dx, then you must keep eating gluten until you have a biopsy. Otherwise the tests can be false negative. 2 days shouldnt matter. But start eating again if you want tests.

Otherwise, stick with what you are doing and see the results.

GFinDC Veteran

I suggest you get the tests done. Keep eating the wheat etc and get the blood tests. You can always go gluten-free as soon as your appointment is over. Maybe your friend can recommend the doctor who diagnosed them. The reason I think the testing is a good idea is to share the results with your family. They may not want to accept the possibility that they could have celiac also. But if you get tested and are diagnosed that makes it a more likely they will consider it.

Shay is right, the "gold standard" for diagnoses seems to be the biopsy. The biopsy is recommended by some doctors for sure, but I don't think it is needed. If you have the immune system reactions shown by your blood tests then that should be enough Those reactions indicate something is going wrong with gluten and your digestion. That is what you need to know after all, that something bad is happening.

Kitt1027 Rookie

Shay and GFin - Thank you both for your input!

Shay - I haven't gone as far as working on my pots and pans and checking my shampoos and lotions. I will do that next. I did check online to see if my medications are made with any gluten and thankfully, they are not. Mainly, I'm just checking all the labels on everything and eating alot of veggies and lean meats.

I've felt alot better, but I think I messed up yesterday or something. I had a salad from Wendy's - I had gone online to see if certain things were ok at fast-food restaurants, but of course missed that one. So, I had the Chicken something salad with grilled chicken. I think there was either cross-contamination or they used something when making the chicken, but I immediately got SOOO lethargic. I was sitting at work feeling like I was going to pass out and got a major headache. Before the salad, I felt really good. I was completely awake and alert. After the salad, it was like I had taken a sleeping pill. That's the effect I get after big, heavier, probably gluten-filled meal.

Now, for a long time, I have attributed most of my headaches to seasonal allergies which I've suffered from for years. I wonder now if it's the food!

I will call to try to make an appointment for the blood tests very soon. I will keep y'all posted!

Ginsou Explorer

I'm not 100% sure, but I believe the grilled chicken is the culprit at Wendy's. Go to the supermarket and look at the ingredients on those convenient grilled chicken strips...Tyson, etc. ....all have wheat in them!! Hormel is the only wheat-free chicken strips I have been able to purchase without wheat in them. Not easy to find. I used to buy Louis Rich chicken strips....and they had been recalled because they had wheat in them that was not listed. This was about 2 1/2 years ago. Hormel took over ownership of Louis Rich if memory serves me right.

I'm able to get a lettuce/tomato salad at Wendy's and a side of mandarin oranges. I put my own Annie's French dressing on, and my own allergen free croutons.

Enterolab results explain why I've had digestive problems for 30 years.....family history of undiagnosed abdominal problems...and now my adult children and nephew and nieces are having abdominal/allergy/food problems.

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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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