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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 found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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