Hashimotos & gluten free newbie!

[Kpoll97]

I have been following an extremely strict gluten free diet for just under four weeks now. My mood has improved hugely, I feel more alert, and generally more human! So far I haven't lost any weight- but still really happy with progress. ANYWAY! I was tested for celiac last November and it came back negative. Me cutting out gluten was purely to see if it would help my hashimotos symptoms. Last night I ate chips from the local fish and chip shop as they have gluten free Wednesdays... although while ordering I am not convinced that they are really that careful when it comes to cross contamination. I pushed it too the back of my mind as i had a bit of cold symptoms and feeling lethargic from work and didn't want to cook and told myself who cares it might set me back a bit but im not actually intollerant..ANYWAY cut to today and since I woke up this mornign I have been in agony with abdominal pains. I think they are trapped wind as passing gas relieves it slightly. It was so bad midday I thought mg appendix was gonna pop! I am also completely constipated today which is really unlike me I havent gone a while day without a bm since I was like 13 hahaha. My real question is... is it possible to be celiac with a negative blood test? I just can't see what else it could be causing it. My whole family ate at the same shop and are fine so nothing wrong with food. Nothing else was done differently yesterday!!

[MrWellness94]

Hello Kpoll97,

People who suffer from hashimotos hypothyroidism will often report sensitivities to gluten. The majority of people feel better once gluten is cut out of their diet since gluten is inflammatory to the digestive tract. It sounds like you have sensitivities to gluten, but it’s difficult to say since you were tested when you were cutting out gluten which gives a false negative. All in all, if you feel better cutting out gluten i think it’s best to keep it that way.

[Kpoll97 in reply to MrWellness94]

When I was tested I wasn't following a gluten free diet, I had some digestive issues but didn't think that I was sensitive to gluten.. is it possible to build up a stronger intolerance by not eating gluten do you think? The stomach pains I have been having I never used to suffer with when I ate gluten as the norm.

[ShootingStars]

Yes, celiac blood test can be inconclusive, as Mr.Wellness says. Gluten is not just inflammatory. It is believed that gluten is an antigen, or immune response triggering molecule. People with immune system problems become more likely to have a negative response to gluten than healthier people. From my and other Hashimoto's patients experience, I agree that it causes the body unnecessary problems. Aside from being an antigen, it is also inflammatory, just like dairy and soy. I had a celiac blood test before being diagnosed with Hashimoto's. It was negative. Five months later, I was diagnosed. It was recommended that I try a gluten free diet, but I didn't believe it would help. Five more months passed and I became so incredibly sick. I started thyroid medication and at the same time eliminated all gluten, soy and dairy from my diet. I felt much, much better!

Almost three years after being gluten free, I had to eat it again for several weeks for a celiac biopsy, since the doctor was already doing another procedure. It was negative. Then I got new thyroid labs. In 11 weeks since my previous labs, my TPO more than doubled. I thought it was 3500, but just checked. It was over 3700, and that was almost a month after stopping gluten. True, other factors could have driven my TPO up, but I have kept close tabs on my TPO for years thru several types of illnesses. It's never come close to increasing that much ever. I will be retesting in another 7 weeks. Reactions to gluten can take a long time (weeks) to get out of the body and I am hopeful that being off gluten for almost two months will result in lowered TPO. It previously had climbed to 1800 through the fall when I had colds and flu's, and I thought that was bad. (the top of the normal lab range is 60).

[Kpoll97 in reply to ShootingStars]

Thank you for sharing your experience! When you had to have gluten again did you feel physical celiac-like symptoms? It has definitely been helping my thyroid I haven't had any blood tests yet waiting to hit a couple month gluten free first but I can feel it in myself. I just thought such a big reaction to a bit of contamination to me says symptoms of celiac not hashimotos?

[bd79og]

When you eat a food all the time your body becomes habituated to it and problems with intolerance to it can be masked. When you stop eating that food you give your body a rest from struggling to deal with it, then when you reintroduce the food even slightly your body can have a marked response to it. This is the basis of the elimination diet and then challenge protocol which is the best way to diagnose a food intolerance (as opposed to food allergy).

It sounds like you may have that to gluten what ever the blood test result was, it is much easier to stay off the gluten now than it used to be so just go with it and enjoy feeling better!!

[Maggie0652]

Hi. I have Hashimotos and my celiac test was negative. I went gluten-free 2 years ago and my IBS, which I had suffered from all my life, disappeared.

Since going gluten-free I have had 2 episodes of food reactions which I assume must be due to cross-contamination because I am very careful. In both cases I ate items that I don’t usually eat, that were pre-prepared and labelled gluten-free. The reaction was immediate - I felt nausea for several hours, gas and bloating afterwards and it took several days for the cramps/inflammation to die down.

Foods labelled gluten-free can have a small amount of gluten in them. Obviously it’s too much for me.

My local chip shop does gluten-free Mondays and Tuesdays but when I asked, it’s only the fish that’s done gluten-free. They serve the regular chips with it. So I don’t have them.

[Annealise in reply to Maggie0652]

How are the chips not Gluten Free?

[Maggie0652 in reply to Annealise]

They're cooked in the same fat as the food containing gluten, so are cross-contaminated.

[Rmichelle]

Hi there i am celiac, it sounds like you have been glutenised via cross contamination issues, your body has not had gluten for a few weeks now so any gluten will upset your system, just a crumb from bread is enough to set me off, be very very careful eating out as most places do sell gf food but unfortunatley do not have seperate kitchen areas. I used to eat out alot until i found out i have celiac. Good luck.😊😊

[ThyroidJ]

I have Graves’ disease causing hyperactive thyroid. I’ve cut gluten out but when I do have the odd piece of bread or pitta I get really bad wind, bloating and stomach pains

[HLAB35]

This sounds familiar - when I was starting out I tried wheat free pasta (not gluten free) and it gave me horrible symptoms (diarrhoea and excruciating pain) - it was in a macaroni cheese - so was a bit of a double whammy - put me right off dairy as well. I was negative for gluten as well, but my dad, paternal grandmother, paternal great grandmother and my sister all had IBS with no confirmed cause - only my sister is alive and she was the one who encouraged me to give it up. She'd become super-fit, so I was inclined to believe her.

My great grandmother who died age 95 in 1980 was a 'fussy eater' as she wouldn't touch processed foods, but managed pretty well on lamb shanks, scrambled eggs, salads, cooked veg and broths - sensible woman from the Suffrage era! My father started excluding foods rather randomly (not processed foods, gluten or dairy) but salads, citrus, spices, onions, garlic, tomatoes, peppers - on 'doctor's advice' for them being too 'acidic' ... I really think this contributed to him getting cancer unfortunately.. he probably had appalling gut bacteria and low stomach acid. No-one ever tested him for low thyroid!

I still do have dairy occasionally (never milk or cream) - but it does seem to set off insomnia. I'll try and look into it further as to why that may be happening. At least with dairy the effects are usually on the same day and they don't hang around. Gluten is much more pernicious if you're affected by it.

In the meantime, though, to help you out, I would recommend Selenium once a day (low dose) to prevent autoimmune flare ups and to take Betaine HCl with meals - it makes the world of difference to my digestion!

[Lily288]

Hi Kpoll97,

It's certainly possible that your body was so surprised that you ate at a fast food place of which it gave you crampy abdomen. That's true. However, I'd like to add that it seems you stressed so hard about eating something that you already thought was bad for you; that this thinking in itself tensed your body so much that I'd venture to say that this may have caused your abdomen to react negatively to these thoughts or stress more than the food itself.

You may also be interest s in a book entitled, something like, "Its Not What You Eat, but What is Eating You.."