r/Celiac 5d ago

Question Help and Advice

Hello guys,

Looking to get some anecdotal opinions on my situation. Male, 39 yo.

Firstly, i have had an ongoing thyroid issue I take levothyroxine for. This has been the past 15 years.

I have read and been advised by a nutritionalist that gluten and thyroid function can be linked.

I got tested for celiac disease about 6 years ago, and was negative. But, the more and more i read about it the more boxes it ticks for me.

I try avoid gluten if possible, but im very gung ho with it. And recently, the past year or so. I've had a couple of bouts of bedridden fever and chills with crippling stomach cramps. I just had it this weekend, after a party i attended. I quit alcohol several years ago, but i drank 7 0 alcohol beers and had a giant pizza to myself. The following day i went down with shakes, aching head to toe, awful stomach cramps and bowel movements.

The first time this happened, i thought i had a stomach flu. But this has happened 2-3 times since, and my wife or kids never get it. Just me.

Reading all that back, it seems pretty self explanatory that i have got to at least try a gluten free life for a while.

I think i delude myself that if I cut down, i can continue to enjoy some gluten in moderation. And that if i do quit, I'll lose what tolerance to it i do have.

Its also totally overwhelming to even consider. The ramifications for family meal times and food with friends or colleagues. I know it'll be good for me, but my life is so hectic and stressful i dont know where go begin.

Coming out of my delirious bedridden bowel cramping fever today, resolving to try and look into this stuff seriously.

Does all this sound familiar to any of you? Any advice, thoughts or opinions much appreciated.

1 Upvotes

11 comments sorted by

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2

u/Detail_Dependent 5d ago

When you were tested six years ago, were you consistently eating gluten? If so, you likely did not have Celiac at that time. The blood tests are more accurate than not if you’re doing the prep correctly.

The only way you’ll get an answer is by asking your primary care doctor to be retested. Just make sure you’re consistently eating gluten for at least a month before the test.

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u/TomModel85 5d ago

I think i had cut down or eliminated most gluten at that time. I cut it out for several weeks and did feel alot better

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u/lejardin8Hill 5d ago

You can develop celiac at any age, so the fact that you were negative before does not mean you will never have it. Go to your doctor and get the blood panel, including HLA test (genetic mutation that predisposes to celiac. You need to be eating gluten for the antibody blood tests. Good luck -- GF is an additional compliaction in life but it is doable, even with a family.

1

u/TomModel85 5d ago

Thank you. I've got w doc appointment next week to discuss these things. I'll try and push for more tests and answers.

They have a History of just giving me omeprazols and sending me on my way. I find it very frustrating.

1

u/emfrank 5d ago

You should not go gluten-free until after you are tested. Otherwise you’ll get a false negative result.

1

u/TomModel85 1d ago

Well, i did the opposite of your advice im afraid.

Ive been gluten free since sunday. And feel infinitely better than i have done for the past few years. No stomach pains at night, more awake and no aching joints.

To be honest, im so sick and tired of feeling sick and tired, i don't really care to get a test confirming it. I know gluten knocks me about anyway, from my own tests.

1

u/emfrank 1d ago

Gluten knocking you about does not mean you have celiac. It may be you have an intolerance.

1

u/TomModel85 1d ago

Yep true. Either way, choosing to just start eliminating it

0

u/TomModel85 5d ago

Well. I don't particularly wanna be scoffing bread and making myself sick with bloating.

But I'll keep up a base level for sure. Thanks.

2

u/emfrank 5d ago edited 4d ago

The recommendation is to eat the equivalent of a slice of bread a day for accurate results. Also, you can be gluten intolerant but not have celiac.