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Think I May Be In The Same Boat
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7 posts in this topic

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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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 :)

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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

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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

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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

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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

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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.

http://www.enterolab.com/ Here is their website where you can get more information if you want about that.

Good luck :D

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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