To all those who are gluten free....

[MissFG]

How do you know if you’ve been glutened and what are your symptoms?

[Tasker]

For me, the symptoms come about 30-36 hours after being glutened. I get a fierce headache in my left temple (almost like a migraine), and a few hours later abdominal bloating, gas and sometimes cramping. My bowel movements are - well, let's just say not normal (!) over the following 24 hours, and then that settles down but I feel mentally and emotionally a bit off for a two or three more days. It's not the worst reaction compared to some others (and I'm not diagnosed coeliac) but it's bad enough to reinforce my determination to stay GF.

[Baobabs]

Same as Tasker

[pandv in reply to Baobabs]

I get awful brainfog / cognitive impairment - reasonably quickly that can set in for the day, lingers for a few more depending on severity I presume and my mood plummets. Peripheral neuropathy kicks in, tingling / numbness in my pinkie and outside ring finger. It’s like a super power just a really bad one (tingling hand man - look out Spider-Man) Also the usual digestive gubbins. Activated charcoal seems to really help contain the symptoms if I can take the pills quick enough.

[Baobabs]

I also get severe itching without a rash across my back, just by the bra line.

[Kes8]

Little blisters at the back of my mouth - not overly painful and a almost burning sensation from mouth to all the way through. Noisy digestive system with very much increased motility. Then a kind of irky systemic feeling of like flu but not that bad almost fuzzy. Not fun!

[Hashi-Monster]

The first symptom I experience is intense fatigue usually within 12 hours. Then about 24-36 hours I get the abdominal bloating, gas and stools go pale and stinky, this lasts 2-3 days. Then I get lots of mouth ulcers which last a couple of weeks.

[Baobabs in reply to Hashi-Monster]

Yes i relate to fatigue, drug tiredness.

[MissFG]

Does anyone experience stomach shaking / tremors with pain? Sounds like everyone reacts differently

[Hashi-Monster in reply to MissFG]

I can get stomach pain if the gluten attack is severe.

I’ve never experienced shaking or tremors from gluten

[Rmichelle]

Hi there, im celiac but usually my symptons can vary they start around 6 hours later with stomach cramps and vomiting or if its slight poisoning then it would be just horrid collickly pains and exhaustion and sometimes running to the ladies. You will get to know.xx

[Hidden]

Terrible joint aches for me afterwards.

[Baobabs in reply to Hidden]

Yes this is another of my symptoms.

[Kipsy in reply to Baobabs]

Me too

[ShootingStars]

Hi MissFG. Very good question! I don’t eat any gluten at all. I am very careful about where my food comes from. I don’t eat processed foods unless they have very few ingredients and no bad chemicals. I honestly don’t know that I’ve been glutenized but surely I must have been a few times.

The only time I know for sure that I’d been glutenized was when I had to go back to eating gluten for awhile for a biopsy. My TPO more than doubled into the thousands with my next lab test (I test every 6 weeks when it starts climbing or if something feels off. If it’s gone down and I haven’t tested for awhile and I’m feeling great, I’ll test it then too). I had also started having that weird thyroid sensation, got an ultrasound and my thyroid and nodules had grown a little. That’s what often happens when antibodies increase. 😔

In my test 6 weeks following, it more than doubled again. It is still at that unmeasurably high level (over highest number the lab can register) 6 months later.

I cannot attribute all of my high antibodies to gluten alone but I feel that it had an impact. Two months after my antibodies grew wings, I was exposed to two antigens that most likely also triggered my immune system. Knock wood, even with very high antibodies I am feeling how I did prior to them flying high. I think it’s probably because of my diet and that I keep my thyroid levels optimal by taking T4 and T3. Hashimoto’s is such a strange and unpredictable disease.

[MissFG in reply to ShootingStars]

Gluten definitely affects antibodies. I just enjoy socialising and eating out - not always easy on a gluten free diet.

However I am finding more and more restaurants carer for gluten free and have strict ordering/cooking procedures which is reassuring.

My main issues with gluten is with my stomach which is improving and good probiotics have helped too.

Do you do private testing every 6 weeks? Which do you use?

[ShootingStars]

Hi MissFG. I can always find something to eat at restaurants that's GF, or else I'll leave and go to a different place. If not GF, I will not eat it. Not worth what it does to my body and thyroid. To reap the benefits of GF, you have to be completely GF. No cheating. If you are reactive to gluten, any amount of gluten is still triggering reactions within your immune system. It can take awhile for that response to go away and for antibodies to decline. If eating small traces of gluten here and there, it's just dragging out the immune response and inflammation. I used to have stomach problems with gluten. A mix of lots of sharp pains, bloating, gas, constipation and then diarrhea. That's why I decided to try GF years ago. It was a miracle to stop gluten and then to feel so much better! All of those symptoms are gone since I do not ever touch gluten. It's too bad that I had to eat it this winter. I was afraid it would effect my antibodies and it did. I've taken probiotics for many years. Not always the same mix of probiotics though.

Isn't that nice to see GF more frequently on menus? Even so, I always still ask restaurant staff about their GF policy. I've seen some menus advertise GF. Then when asked restaurant staff says "we can't guarantee there will be no gluten contaminants in your food". OK. So why list it as GF then without a written explanation about the risk? Why not just call it gluten free with a risk of gluten contamination? I feel bad for all of the people who choose to try their GF food and are then unknowingly glutenized.

I just ask any of my doctors for lab tests and they order them. I usually email my GP and ask her. She will order my thyroid labs any time I ask. If I feel that I need tests, she'll also order most others I've asked for. Sometimes she questions them, but I explain why and she has never said no. I have to pay lab fees after my medical insurance pays anyway. I have another 1-2 doctors that I could ask for labs, too. I am not in the UK. I have never had to order any private labs.