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Newbie With Questions


ebrbetty

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ebrbetty Rising Star

hello, I just joined the board and am hoping to find some answers..I've had terrible stomach pain,bloating,gas,heartburn [no ulcer] for close to a year. my stomach hurts 24/7...somedays worse than others,My Gastro has given me every test he can think of,keeps telling me I have a very bad case of IBS...I don't agree,the pain is awful.

I came across this site looking for help...could someone please tell me the symptoms and If there is anywhere I can get a list of food I can eat and not eat..from what I'm reading here on the board it looks like most foods are a no-no :angry: I had a english muffin with a egg and cheese this morning and now I'm dying with stomach pain and can't stop burping

HELP PLEASE!!

thank you very much

Betty


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RiceGuy Collaborator

Welcome to this forum. I'm sorry you are having such difficulties. You are not alone though, and we are always here to help. I hope you find the answers you need.

From your description, it does sound like it could be gluten giving you those problems. This site has tons of info which can more than answer the questions you have, and the members of the forum are also a wealth of information.

Here's a link for safe/forbidden foods:

https://www.celiac.com/st_main.html?p_catid...-02105529657.e2

Here's a link to some FAQ's about Celiac:

https://www.celiac.com/st_main.html?p_catid...-18105508857.9d

The best test for being gluten intolerant is the change of diet. If it works, that's really the best indicator, as many here have found. It may appear like most foods are a no-no, but it's really because the typical American diet is centered around wheat. Take a look at your current diet, and you will likely see meal after meal of wheat based foods. That's not unusual, but don't be discouraged. Once you discover all the foods you have been missing out on all your life, you will not miss the wheat so much if at all. Especially when you find out how much better your health can be.

My personal view is not to wait for a doctor to recommend the gluten-free diet. Try it right away, and if it works, you'll be that much better off for it. Many do decide to get an official diagnosis, though I haven't and don't plan to.

Many will tell you how the recovery time can vary widely from person to person. Some see an almost immediate response, while for others it takes months. For me it was about 6 months before I started seeing any improvement. It depends on many factors, not the least of which is the extent of the damage to your insides.

ebrbetty Rising Star

Thank you very much for your help. I feel overwelmed at this point...I just looked through my cabinets,not much I can eat :angry: I will try a plain chicken breast with potato tonight..my dr. has given up on helping me....we've tried all the tests and meds he can think of, no help...keeps telling me to eat light and stay away from butter and high fat

any help is very much appreciated..ready to give up before I start!

Betty

StrongerToday Enthusiast

Hello and Welcome! I'm pretty new here myself, but have learned *tons* from this website - read everything you can get your hands on!! Has your dr. run any Celiac tests? If not, and you want to be tested (both blood and stool) then you need to be consuming gluten - at least for the blood tests. OTOH, my blood panel came back perfectly "normal", as lots of other people's have. I don't need the paper to tell me I'm having wheat and/or gluten sensitivities. Truly the best test is to cut out all gluten and see how you feel. I've been blessed to have a good doctor, a friend who's a nutritionist who has helped me a lot, and access to the internet so I can check this website daily!! Good luck and don't be afraid to ask questions.

Hope you're feeling better soon...

ebrbetty Rising Star

thank you for the encouragement...there is just so much info,my head is spinning :blink: still trying to find a good list of foods I can eat and not eat.

If gluten is the problem,then wouldn't my pain be severe everyday? I have been eating it everyday but somedays my pain,bloating hearburn is not as bad as other days

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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