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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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