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Frusterated With Doctors Could This Be Celiac?


Smokeybear

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Smokeybear Newbie

Ok i am male and 20 years old. i'm overweight i know lol. about 3 months ago i started feeling bloated and full short of breath and weak. thought maybe it was an infection talked to my doctor and he prescribed me bactrum and sent me home. few weeks later still the same except now i'm getting weaker. i've lost alot of my energy barely feel like getting up. i have sharp pains in the center of my chest sometimes on the left side of my chest in my arms and sometimes in my neck but mostly in the center of my chest. i've been run thru the mill about my heart but it all checks clean blood work is all clean. i've been out of work for 2 weeks now so i don't eat much and i've noticed that i don't feel half as bad. but when i eat something certain times i get to hurting in my chest and short of breath. I've had acid reflux for about a year now and stomach ulcers when i was in college. i'm on omeprazal for that. i hope this isn't TMI but I've also noticed i have fatty stool that is light in color and floats. i also get dizzy headed alot at times too sometimes a light headed feeling. my doctor says he thinks it is esophageal spasms. i know that when i start hurting in my chest it can last 10 to 30 mins and the shortness of breath can last awhile. could this be celiac or should i be looking elsewhere.


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Bubba's Mom Enthusiast

One of the reasons I think it's hard to get a diagnoses is that there are SO many symptoms we can get from gluten if we're sensitive to it? Sometimes the answer isn't gluten, but it sure can't hurt to find out? If you've been eating it all along ask your Dr. for a celiac blood test. A LOT of Drs. only think of celiac if you have diarhea, unexplained weight loss, and anemia. It's a shame they miss the other symptoms.

If your blood test comes back positive you'll know for sure. If your test comes back negative.. I recommend a trial of a completely gluten free diet for 3 months. There are a lot of posts here on how to look for trace amounts..so you'll have to do some reading and a little detective work. Good luck to you! I hope you get some answers.

Smokeybear Newbie

One of the reasons I think it's hard to get a diagnoses is that there are SO many symptoms we can get from gluten if we're sensitive to it? Sometimes the answer isn't gluten, but it sure can't hurt to find out? If you've been eating it all along ask your Dr. for a celiac blood test. A LOT of Drs. only think of celiac if you have diarhea, unexplained weight loss, and anemia. It's a shame they miss the other symptoms.

If your blood test comes back positive you'll know for sure. If your test comes back negative.. I recommend a trial of a completely gluten free diet for 3 months. There are a lot of posts here on how to look for trace amounts..so you'll have to do some reading and a little detective work. Good luck to you! I hope you get some answers.

Me too. my doctor seems to act like he is sure it is esophageal spasms but he has not attempted to send me to a GI specialist. i know for the last few years I've had problems with joint pain in my fingers and such back pain and GI problems but i played em off as just something bad i ate. but then when i got short of breath and pain in my chest it scared me. and I've gotten extremely weak just doing house hold things has became a challenge for me and i was always strong as an ox. i haven't been to work in two weeks i just lie around all day and i don't eat much when i lie around and I've noticed that i don't get the pains that often but when i go out to eat or eat a large meal or something i go to hurting pretty bad. looking over the forums and several other sites I'm starting to wonder if maybe this has been the cause of alot of my problems for years that I've been getting treated for individually when they are actually connected.

rosetapper23 Explorer

They might be esophageal spasms, but I get those after I've eaten gluten...so that might be the culprit for you, too. I don't have much regard for doctors, and celiac is usually too much of a challenge for them. You might try going gluten free to see if your symptoms resolve. They sound like typical celiac symptoms to me; however, they are also symptoms of other disorders....but it's easy to go gluten free, so why not try?

Smokeybear Newbie

They might be esophageal spasms, but I get those after I've eaten gluten...so that might be the culprit for you, too. I don't have much regard for doctors, and celiac is usually too much of a challenge for them. You might try going gluten free to see if your symptoms resolve. They sound like typical celiac symptoms to me; however, they are also symptoms of other disorders....but it's easy to go gluten free, so why not try?

Can someone please give me an idea and maybe some good things to eat and what not to eat? and i'm hopeing you guys tell me i can still eat my hotwings. i LOVE hotwings. but i don't feel too bad when i eat those it's other things sometimes i ain't even gotta really eat and i can start hurting.

MissKris2 Newbie

If you want to be tested for celiac, do it before you start eating gluten free. Otherwise you might get false negatives on the tests. I started eating gluten-free and felt a lot better but I had to start eating it again to get a diagnosis. You can ask the doctor to order a celiac panel and go from there. It's totally up to you if you want to get tested or just go gluten free and see how you feel.

rosetapper23 Explorer

I don't know about the hotwings--what are the ingredients? I'm sure you can find a gluten-free recipe somewhere on this site for hotwings.

As for what to eat, generally it's best to eat natural foods for a while so that you can avoid cross-contamination. That means meat, fruit, vegetables, potatoes, rice, dairy, and nuts. Be careful with the dairy--I usually choose to eat organic brands and have had no gluten contamination from them. Be extra-careful with yogurts--look for "gluten-free" on the packaging. Certain cereals are gluten free: Cocoa Pebbles, Fruity Pebbles (without the marshmallows), and specially marked boxes of Chex and Rice Krispies cereals. Don't eat soy sauce because it contains wheat, but you can use wheat-free Tamari sauce instead. Don't eat anything that is processed for at least a few months. Don't drink beer, but you can drink wine and a few other drinks (you'll have to check the alcoholic list on this site). There are good gluten-free mixed flours out there for baking (I like Bob's Red Mill products). If you bake something, don't forget to add a few teaspoons of xanthan gum.

As for gluten-free alternatives that you feel you really need to eat, the best pasta appears to be Tinkiyada, and the best breads are Against the Grain Gourmet Baquettes, Rudi's, and Udi's--you can find these brands in the frozen food section of most upscale supermarkets. As for crackers, I personally like Crunchmaster, which can be found among the regular crackers, and Glutino has a good line of Ritz-like crackers that can be found with the gluten-free foods. There are a number of gluten-free pizzas, and I like Glutino best...but I know that other folks on this forum have found other brands throughout the U.S. that they like better. No all brands are available everywhere. As for salad dressings, I just use balsamic vinegar and olive oil.

Hope this helps!


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krystynycole Contributor

If you want to be tested for celiac, do it before you start eating gluten free. Otherwise you might get false negatives on the tests. I started eating gluten-free and felt a lot better but I had to start eating it again to get a diagnosis. You can ask the doctor to order a celiac panel and go from there. It's totally up to you if you want to get tested or just go gluten free and see how you feel.

My husband buys his own wings without breading. Sometimes he uses gluten-free bread crumbs, other times just plain. Then fried them in our home fryer (that is always gluten-free!!!) with his choice of sauce on top. Still tastes great, but safe at home!

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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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