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Rib Pain


AcrossTUnv.

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AcrossTUnv. Newbie

Hello. I am new to Celiac/Gluten sensitivity. I became very ill for a year and a half and was given test after test! It wasn't until I told my Doctor that I was developing a rash and trouble breathing after eating that we decided to have a blood test for food allergies. I have many allergies including gluten and wheat. My OBGYN thought that I also had Celiac. My doctor would not do the test as he thought them to be wrong most of the time and hard to do. He also said I would be skinny as a stick, I had gained almost 40 pounds during my 1.5 years of medical tests. He also said I would just have to go gluten free any way. So I have not been diagnosed with Celiac. I have been really good at keeping away from gluten but last week I had a reaction I have not had since cutting off gluten. When I looked up these symptoms they seemed to meet the symptoms of a celiac response. (I am still very tired and weak so I am sorry if this information is elsewhere and I have just missed it) I am looking to you for your experience with such reactions in case it happens again. I had intense, 10 on the pain scale, rib pain, light hotheadedness, labored breathing, tiredness, and diarrhea. If anyone has tips to share on what to do if this happens I would love to have them. The ribs hurting was so bad. I'm used to the rest with the other allergies and not having a gull bladder. Is there any use in going to the ER when this happens? Should I insist on the Celiac testing?

Thanks in advance for all of your help!

Heather


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nora-n Rookie

Hi, that was a very stupid doctor.

also, only 5% of celiacs are under-weight at diagnosis, as oppsosed to 39% over-weght or obese.

The body lacks nutrients and fatty acids and swithes on a survival mode and grabs lots of things from the food and stacks them up in the body.

I have also heard from people who gained water weight due to severe malabsorption and too little proteins in teh blood.

I lost 20 kg after going gluten-free, and I just could not lose them before.

Of course you should have bene tested, both blood tests and biopsy.

as to your symptoms, I do not know, it is possible. All kinds of symptoms are possible.

You ahve been gluten free now, so the tests are gonna be negative since they test for the antibodies and one glutening does not cause positive tests.

You could go ahead and ask for the blood tests including the IgG type tissue transglutaminase and IgG type antigliadin tests, since they stay high much longer than the IgA versions of those tests. Maybe they are still elevated.

But if they are negative, this does not prove you are not celiac.

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    • trents
      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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