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Hello, New Here, Awaiting Tests


LeighsaH

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LeighsaH Newbie
:) Hi! I am new here today. I have been sent for tests by my doctor today and I hope to have the results in the next 3 weeks. I am a bit nervous reading all the things that celiac disease can cause, since I seem to have most of the symptoms, and it's all abit scary right now, but I think this site might prove very supportive and helpful. Is there anyone else in here from the UK?

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Canadian Karen Community Regular

Hi! Welcome to the board!!! :)

Actually, we do have some people from the UK on the board here. I am sure they will be chiming in shortly!

Any questions you have, just fire away! There's a bunch of really great, helpful and knowledgeable people on this board!

Karen

nettiebeads Apprentice
:) Hi! I am new here today. I have been sent for tests by my doctor today and I hope to have the results in the next 3 weeks. I am a bit nervous reading all the things that celiac disease can cause, since I seem to have most of the symptoms, and it's all abit scary right now, but I think this site might prove very supportive and helpful. Is there anyone else in here from the UK?

<{POST_SNAPBACK}>

Welcome to the board! When you read the other posts you will realize that no question is silly, stupid, or off limits. We will discuss anything - diarhhea, gas, bloating, cycles, excersize, makeup dating, foods, doctors, you name it. A lot of people are very knowledgable (if you every read any posts by celiac3270, you will want to ask him if he's sure he's only 14) and every one is helpful. The gluten-free diet isn't impossible, just takes effort and after awhile it will be second nature you won't even think about it.

lbsteenwyk Explorer

Welcome to the board! YOu will find tons of great information here. Let us know how we can help :D

Mjohnson73 Apprentice

Welcome to the board!

I am still a "newbie" myself... I am still learning what is and isn't gluten-free..... I have been on the gluten-free diet for almost a month now and I have seen great improvements....still have some cross contamination stuff going on and still getting effects every so often but not nearly as bad as before!

but welcome to the board and I second the comment about celiac3270, he certainly does not seem to be only 14! he is incredibly knowledgeable.... as is everyone on this board! and very welcoming!!!

Again Welcome!

--Maya

jknnej Collaborator

Welcome to the board! Take it one day at a time and try not to feel too overwhelmed. I've been gluten-free for 9 months (holy cow) and I'm still learning what I can and can't eat all of the time! You'll get used to it and this board is a HUGE resource; a real God send.

celiac3270 and Kaiti are huge experts and two of the nicest people here! (No offense to anyone else of course!!!)

  • 1 month later...
LeighsaH Newbie

Ok, it's been a while, but I was awaiting results. Now I have them and I DON'T have Celiacs, but they still don't know what's wrong. So, since I don't have it, I probably won't be around much, but thanks for being there. ;) Take care, all of you.


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floridanative Community Regular

Please consider that some people don't have positive biopsy results, yet they still can't eat gluten. They are what is called 'gluten intolerant'. My GI told me this week that if someone is intolerant and continues to eat gluten, they will eventually get Celiac disease. So you may want to talk to your doctor about trying the diet to see if you get better. If you do, you'll have your answer as to what is wrong with you. Good luck getting better!

Tiffany M.

angelsea Newbie
Ok, it's been a while, but I was awaiting results. Now I have them and I DON'T have Celiacs, but they still don't know what's wrong. So, since I don't have it, I probably won't be around much, but thanks for being there.  ;)  Take care, all of you.

<{POST_SNAPBACK}>

Yes, please consider what "floridanative" just said. I believe you said you are in the UK -- I wonder if you might have access to the book "Dangerous Grains" by James Braly. I got a copy from my library yesterday and am only about halfway through and am convinced that many, if not most of us, celiac or not, symptomatic or not, can benefit from a gluten-free diet (not that this is any indication that it would be an easy task!). I'm just realizing how naive I was to think that celiac disease was the only reason one might want to avoid gluten.

Good luck in your search for finding the solution to what ails you.

Guest BellyTimber

I'm from UK & only just seen your post, hope you haven't gone too far from forum yet!

There is also a message board based in the UK where everyone is welcome for any kind of wheat and gluten sensitivity/intolerance and interest in the gluten-free and/or WF life style for whatever sincere reason, and I think that is true of this forum too.

celiac disease is a construct and there has been emphasis on a certain pattern of phenomena whereas the reality is a variety of expressions throughout the body.

It's estimated 1 person in 80 in the UK has celiac disease but only between one in 4 and 1 in 10 is getting a diagnosis (depending on which book one reads), basically the vast majority are undiagnosed, from not testing, from misreading tests and from not carrying them out skilfully enough.

I didn't have all the right tests and was told to go gluten-free without having the endoscopy and apparently this is rather usual.

The professionals have vast experience of celiac disease and equivalent conditions - without knowing it.

Hence many of them are put off from adequately continuing examinations/management of the patient's condition.

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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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