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Think I May Be In The Same Boat


zoommedix

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zoommedix Newbie

Hi All

Another newbie

Confused and curious, a little history

I've been felling "like Crap" for lack of a better term on and off for two years at least, first it started with heartburn type symptoms which long story short was diagnosed as GERD "reflux" this has actually been really good the last year or so what has not been good is my head. At first I thought it was sinus problems and it maybe but I always have underlying symptoms that may be celiac in nature. The reason I'm thinking this is that I finally got fed up and went to a naturopathic doctor. he put me on a 3 week allergy elimination diet. after the first week i felt no better then i eliminated wheat and saw some improvement the last wek has been much better and I have put all foods back in minus grains, I felt awesome for a few days and was quite encouraged. I went out for supper the other night and had steak and mushrooms ( i think the shrooms had soya sauce but I assured befoe hand there was none in it) any way the last two days have been brutal again my symptoms include

Foggy head ( unclear )

irritable

depressed at times

aches in arms and legs

Tired

Malaise

Low grade Headaches

Trouble concentrating

mood swings

I don't seem to have a lot of GI symptoms though

Just wondering if anyone has opinions

Also if any of you accidentally eat wheat etc how long do your symptoms come back for b4 they subside??

any opinions would be helpful

Thanks


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celiac3270 Collaborator

You sound celiac to me...1% of the population has it--gives you good odds to start--and then, your symptoms match up. Actually, the most common symptom is fatigue...not diarrhea, not gas...not any GI symptom. You have the most common symptom, along with a few other "typical" celiac symptoms: mood swings, depression, and irritability. I think you should get tested--and don't let your doctor talk you out of the notion that you might have celiac. Doctors recently realized that a person with celiac disease doesn't need to be and most often, isn't the short, thin person with bloating, gas, stomach pains, diarrhea, anemia, and nutritional deficiencies.....doctors finally realized that there is no TYPICAL celiac...because nothing is typical about it. No two people have the same exact symptoms and there are over 200. So get tested and welcome :)

KaitiUSA Enthusiast

It does sound like it could in fact be celiac. There are many symptoms associated with celiac and not everyone has the same ones. You don't have to have GI symptoms you don't even have to have symptoms at all and can still have it. I would recommend to get tested. Surgeries, childbirth, viruses such as mono, and things like that can trigger celiac as well. My celiac was triggered by mono and thats when all my symptoms started. It is a very underdiagnosed disease I would definately get tested for it. I understand feeling like crap all the time I used to feel like that too...but thankfully there is something you can do to feel better with celiac. Good luck :D

ianm Apprentice

Sounds like all of the symptoms I had. Seems like there are new people coming aboard everyday. That can only be considered a good thing.

When I ingest gluten it takes about two minutes and my lips start to get a tingling/prickly sensation. I then start to feel some fatigue. At that point I stop eating to avoid further contamination. I alway take small bites at first and eat slowly just in case there's any hidden gluten.

Welcome

Ianm

stef-the-kicking-cuty Enthusiast

You sound celiac to me also. Definately get tested and as celiac3270 said. Don't let your doctor talk you out of it. Stay stubborn. Some docs tend to try to talk you out of it. We heard that a lot in here.

I wish you good luck and welcome on the message board.

Hugs, Stef

zoommedix Newbie

Thanks for all the input I found out the problem I had the other day may have been some meat I had that I did'nt know had wheat flour in it. I felt awful within hours and am slowly feeling better now 4 days after the fact!

Question If I have been gluten free for 3-4 weeks and get tested will i geta negative result because i have been not eating gluten laced products??

Thanks''

zoommedix

KaitiUSA Enthusiast

Yes they will most likely come back negative. To get tested you need to be on a gluten filled diet. If you don't want to go back on gluten I would maybe recommend an Enterolab because you do not have to get back on gluten to be tested for that.

Open Original Shared Link Here is their website where you can get more information if you want about that.

Good luck :D


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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.
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      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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