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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
    • cristiana
      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
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    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
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