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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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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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