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Frustrated


teddylab

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teddylab Rookie

I cannot figure out what is wrong with me!

I have had

*SEVERE Bloating

*Nausea

*General Discomfort

*Gas

*Constipation/Diarhhea (alternating)

*Indigestion

*Fatigue

After a lot of searching, I thought I may have celiac or a gluten intolerance.

My symptoms have been slowly building up and slowly getting worse.

Two of my Aunts and father experience difficulty eating wheat products, and my sister has crohns disease.

I've been to my doctor, who had my blood taken. He thought I had a stomach infection - but it was clear. In fact, everything on my blood test was in the normal range.

I asked whether it could be something to do with what I was eating, like gluten, and he told me that celiac disease was highly unlikely. He said that he would expect someone with celiac to be extremely thin and be very sickly (he made motions as if someone was very old and fragile?) I do have some extra weight, but I am not obese.

He ordered a celiac test for my bloods anyway, but didn't seem convinced.

MY QUESTIONS

- Could this be related to gluten?

- I have normal levels in iron, vitamins, etc, is it possible to have gluten intolerance without being deficient?

- I am not emaciated, are all celiacs thin?


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rosetapper23 Explorer

Regarding whether or not it's normal for a celiac to be overweight, the answer is YES! Your doctor is living in the Old Ages. They USED to teach that in medical school, and it's quite inaccurate. From what I've learned at conferences on celiac, it's much more common for a celiac to be overweight than underweight. Reasons include nutritional deficiencies that prompt a person to eat because his/her body perceives that it needs more nourishment and also we tend to metabolize fat differently. Your doctor needs an up-to-date lesson in celiac disease! Also, it's ridiculous that he told you that celiac would be highly unlikely, especially in light of the fact that you have relatives with wheat problems and Crohn's--good grief! If anything, this makes is MORE likely that you'd have celiac. If you can change doctors, please do so. This one will do you no good. I would suggest getting tested for celiac through another doctor...or perhaps you should ask for a referral to a knowledgeable gastroenterologist (if you can find one, that is).

teddylab Rookie

Regarding whether or not it's normal for a celiac to be overweight, the answer is YES! Your doctor is living in the Old Ages. They USED to teach that in medical school, and it's quite inaccurate. From what I've learned at conferences on celiac, it's much more common for a celiac to be overweight than underweight. Reasons include nutritional deficiencies that prompt a person to eat because his/her body perceives that it needs more nourishment and also we tend to metabolize fat differently. Your doctor needs an up-to-date lesson in celiac disease! Also, it's ridiculous that he told you that celiac would be highly unlikely, especially in light of the fact that you have relatives with wheat problems and Crohn's--good grief! If anything, this makes is MORE likely that you'd have celiac. If you can change doctors, please do so. This one will do you no good. I would suggest getting tested for celiac through another doctor...or perhaps you should ask for a referral to a knowledgeable gastroenterologist (if you can find one, that is).

Thank you, this is what I needed to hear.

I am definitley going to find a new doctor, or maybe see if I can talk to a specialist in this area.

I think it's very sad that many people on here know much more about these health issues than the doctors themselves.

mushroom Proficient

A lot of medical professionals think that support groups and forums are just places where people commiserae with each other (well, we do that. too!) But they don't realize that the groups, forums and internet are the primary source of information, and that without them we would know as little as they do.

birdie22 Enthusiast

I think yes, it is likely you have an issue with gluten. I have very similar symptoms (bloating and heartburn was what brought me to my doc). While I am blood test neg for celiac I at least have non-celiac gluten sensitivity. All my blood tests for vitamins and minerals are also in the normal range like yours. But several were on the lower end of normal. Things have greatly improved on a gluten-free diet. You are your own best advocate. If you current doc doesn't take you seriously then seek another opinion. And ask for copies of your test results. That way you can see for yourself what is going on.

MitziG Enthusiast

As uninformed as your doc is, it is likely he did not do a full celiac panel on you. So if he tells you it is negative, request a copy of the labwork and post the results here. We will tell you what is missing. Id bet you a dozen gluten free donuts you are celiac.

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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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