Should I be tested, and which test(s)? - Gluten Free Guerr...

Gluten Free Guerrillas

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Should I be tested, and which test(s)?

Arianrhod profile image
6 Replies

Hi all, new to this site and to gluten sensitivity altogether! I hope you all don't mind my giving a bit of my history, as a background to my question below.

I was diagnosed as hypothyroid last September during tests following three miscarriages (I have since had 2 more). My TSH and FT4 levels are now in a good way, but I continually research into ways to improve my thyroid and in reading around, saw it recommended (on the Thyroid UK support forum here on Health Unlocked, amongst other places) that a gluten-free diet would be a good idea as gluten sensitivy could have an effect on the thyroid.

I should add that I have mild psoriasis (elbows, knees and fingernails) along with small eczema patches on my arms, as well as joint pains in the joints of my hands, my hips and occasionally knees which I took to be linked to my psoriasis. Additionally, these joint pains along with psoriasis on my knees only started after the birth of my daughter 5.5 years ago. My miscarriage consultant told me that pregnancy is often the trigger for hypothyroidism, and I thought no more of it. I've also put on a stone and a half in two years without having changed my diet or exercise; I am vegetarian and don't eat fatty foods or much in the way of sweet stuff as I don't have a sweet tooth. I was informed that this is likely down to the thyroid problem.

Anyway, I tried cutting out all gluten for two weeks and then accidentally had a large piece of quiche for lunch last Saturday (I know, I should have thought, but it didn't occur to me that quiche base is of course wheat-based!). Three hours later I started developing strong stomach cramps, which progressed down my digestive system and I had major intestinal pains and bloating all evening. The pains subsided to a degree overnight, but I only felt back to 'normal' 2 days later.

Given that I hadn't had anything else to eat other than salad, I can only attribute it to the quiche. I would also say that ever since my childhood I have suffered from regular constipation and only after some adult years had passed did I work out that it seemed to be caused if I ate too much toast (I love bread, and could happily eat toast every day!). I managed to mostly remove toast from my diet, and that seemed to sort that particular problem out.

Anyway, my question is, should I be getting tested and if so, what for? Presumably I'm not full-blown coeliac as other than bloating/stomach and intestinal cramps I don't have any other major side effects that I know of. Apart from that one slip I've now been gluten-free for three weeks and while I don't feel any different in myself, I didn't feel particularly bad to start with. I suspect the difference will come if I attempt to eat something with gluten in again, which I was advised to do after 4 weeks of being gluten-free, to see what happens.

Not sure whether testing makes any difference, other than I'd like to have it "confirmed" that I am indeed gluten-intolerant, if that is true.

Thanks, and sorry for the long post!

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Arianrhod
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6 Replies

Hi, The first thing that i would say is that to be tested for coeliacs you need to be still eating gluten in your diet. Also, i am classed as Non-Coeliac Gluten Sensitive as all my tests for coeliacs came back negative, so you dont have to have coeliacs diesease to have these symptoms, i too have thyroid issues and B12 deficency and very low Iron accross the board and Perncious Anemia. I think you need to go to you Gp for advice regarding getting tested and how to introduce gluten back into your diet without getting very ill. Im sorry i cannot give you any more info good luck though and keep us posted.

Paula x

P.S im so sorry to hear about your miscarriages, this happened to me too once and it was horrendous so i cant begin to imagine how you must be feeling

sorry to answer the last part of your question, if you are confirmed coeliac then you get more checks done with regards to your vitamins etc plus i think a bone scan, also you can get some of your food on prescription.

weee profile image
weee

I was diagnosed following a DVT and was discovered to be anaemic. I had an endoscopy (I didn't change my diet at all at this point) and was found to be coeliac. I have annual blood tests at the GI clinic and bone density scans about 3 or 4 yearly.. I haven't had my thyroid tested, I may ask about that

1stgls profile image
1stgls

you need to be eating gluten to be tested for the anti- bodies,

Go to your Gp and say that you have these stomach problems and ask to be tested. no- ones symptoms are the same and I have read time and time again on this forum that a lot of people are not diagnosed for years as their symptoms do no fit in the neat box doctors have...One of my symptoms is constipation (it is rare but non-the less still documented) I am sorry for all of those who have the opposite !

It seems that all whom have one autoimmune disease have a higher incidence of falling foul of others---go do it what have you to lose?

As has already been said, you need to be eating gluten to be tested properly or you will get a false negative result. My son was taken off gluten by our GP 18 months ago for a month as a trial (really shouldn't have been) and we haven't been able to get him back on it. 2 tries by the dietician, introducing gluten really slowly have failed so we have never had a positive test. Having said that he does get his food on prescription as my practice are very understanding and although we tell people he is Coeliac to make life less complicated he can't be given this label officially. By the sound of things you also might have great difficulty getting back on to gluten for a diagnosis. Good luck with this, I hope it all falls in to place for you

marywales profile image
marywales

Please, ask your GP for an endoscopy. my blood tests came back negative but after nagging the doc was finally diagnosed 4 years ago, the small intestine by that time was "flat" in the consultant's words. I had been GF for 2 months by then as I knew in myself that it had to be gluten. blood tests are not that accurate but it takes 2 years or so for the small intestine to repair...an endoscopy is the only real test. I too have pernicious anaemia and arthritis; all autoimmune disorders, they do go together. nag your GP

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