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Missybobbyboo

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Missybobbyboo Newbie

Hello today I'm just back from my gp. Following over 7 years of bloating and looking like I'm pregnant my gp done a series of blood tests one including coeliac. The results came in that I'm not celiac but my iron levels olthough I'm on iron tablets is low. My iron always drops then I'm put on tablets for 3 months then go's back to normal then falls again. I'm also hypothyroid so really at times I just feel Bloo£@ awful.

my doctor now wants me to refer me to a gastroenterologist to look into other testing becaus aparrently he can do more for me. He also said that I should go onto a gluten free diet but when I questioned him if this was wise incase it may effect any tests giving a false result he said it will be fine as he's already done the blood tests. He said it's good to go on it because the gastro will ask me to go gluten free at my first visit and this will saves me being sent home to do this and will buy me some time...

im a bit confused what I should do now. Do I start a gluten free diet now like my gp has suggested or should I just wait until I've seen a gastroenterologist??

thanks in advance.xx


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tessa25 Rising Star

You should not go gluten free until after your gastroenterologist has done their testing.

Did you have the full celiac panel done? A high on only one celiac test means you should have an endoscopy/biopsies to verify if you have celiac.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

It might be different outside the US.

 

 

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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. 
    • trents
      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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