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Does Any Of This Sound Familiar?


OzGirl

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OzGirl Rookie

Hi to everyone! After visiting the doctor about 6 months ago, he diagnosed IBS, ran blood tests for Celiac (which showed nothing) and told me to stay off gluten if I thought it would help me! All of which seemed way too confusing and I have continued on with life as per "normal". Since then I have been incredibly tired, lacking energy, feisty, lacking in tolerance, with all the IBS symptoms thrown in. I returned to the doctor this week because my exhaustion had turned into muscle weakness, my joints are aching, I am very hot of a nighttime, and the most disconcerting thing; after eating, I feel like my face swells (doesn't appear it though). The doctor ran more blood tests and announced me to be in perfect health! He asked if I was stressed/ depressed and offered anti depressants! (An offer I declined). I know that the logical thing is to go gluten free however most of my symptoms could be anything. I am on the "too heavy" side and don't have to make mad dashes to the loo. Is there anyone out there who experiences the face swelling thing? As i said, it isnt noticable, and is only a sensation (I'm assuming). Any thoughts would be appreciated as to my next move! ...Thanks.


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Guest nini

yes I experienced the face swelling.

Please try the diet. Give it a good effort for at least 6 months before you decide if it's not helping. Your Dr. sounds to be wise in this regard. Keep in mind the testing is still not as reliable as the medical community would like us to believe. If it's positive there is no doubt, but when the tests are negative, it only means NOT POSITIVE... in my humble opinion, there is a lot more to gluten intolerance than just Celiac, and the testing hasn't caught onto this yet. Positive dietary response is the best way to tell if you are having a problem with gluten or not. And it certainly sounds like you could be, so it's worth trying the diet 100% no cheating for 6 months and then decide how you feel. The gluten-free diet can be a very healthy and inexpensive diet if done right. Stick with a diet of foods that are naturally gluten-free. Fresh fruits and veggies, clean unadulterated meats, nuts and beans, simple grains like rice and quinoa, buckwheat, amaranth, tapioca... on and on...

rinne Apprentice

Oz Girl, welcome, I have a history of digestion issues and for the past 15 years have been on the round side with C as the main problem. It was only this winter I got sick enough to melt and lost 35 pounds. I don't advise waiting to take up a gluten free diet because if gluten is the issue you will only get sicker and going on a gluten free diet now will give you the answers you need. By the time I got sick cutting out gluten was only the beginning, I can't eat dairy now either, and a number of other foods.

Sounds like you have a great doctor.

OzGirl Rookie
Oz Girl, welcome, I have a history of digestion issues and for the past 15 years have been on the round side with C as the main problem. It was only this winter I got sick enough to melt and lost 35 pounds. I don't advise waiting to take up a gluten free diet because if gluten is the issue you will only get sicker and going on a gluten free diet now will give you the answers you need. By the time I got sick cutting out gluten was only the beginning, I can't eat dairy now either, and a number of other foods.

Sounds like you have a great doctor.

I don't think I'm replying correctly but here goes ! Thanks, to you both for your comments. There's just one other thing that I'd like to run by anyone who's listening out there. Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

par18 Apprentice
I don't think I'm replying correctly but here goes ! Thanks, to you both for your comments. There's just one other thing that I'd like to run by anyone who's listening out there. Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

I don't know if this could be a response to gluten/wheat. You could try not eating gluten/wheat and see if it helps. To me that would be the easiest thing to try.

Tom

Felidae Enthusiast
Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

I personally think it could be the gluten. I didn't realize that gluten was causing my anxiety and extreme worrying until I went off gluten. I am a very calm person now; it's really amazing. I lost all of my exam anxiety and little things that always bothered me stopped after being gluten-free for awhile.

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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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