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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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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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