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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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
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