Welcome to the forum, @Jmartes71,
Wow! 31 years! That's great!
You can get a DNA test to show genes specifically for Celiac. Your genes don't change whether you eat gluten or not.
Have you been checked for nutritional deficiencies? The gluten free diet can be low in essential nutrients. You may have become a bit deficient after such a long time. Deficiencies in certain vitamins and minerals can lead to many health problems.
Start keeping a food journal. Other food sensitivities could have developed. Journaling can help connect symptoms with specific foods. Vitamin D can help calm the immune system so you don't react to everything.
When I was deficient, I had peripheral neuropathy, headaches, migraines, joint aches. I was seriously deficient in many other vitamins and minerals. Our bodies need the eight essential B vitamins to function properly. Thiamine deficiency can appear first because thiamine can become depleted within eighteen days.
Infections can deplete thiamine stores. Covid Longhaulers are frequently thiamine deficient. Ask for an Erythrocyte Transketolace Activity test if available. Blood tests aren't really accurate measures of Thiamine, but if low, you've probably been deficient for a good while.
Thiamine and Vitamin D may help with menopause. I also take Oil of Evening Primrose which helps immensely.
I was deficient in Cobalamine B12, thiamine and the other B vitamins. B Complex vitamins are important for nerve health. I had pain up my legs from neuropathy. A combination of Thiamine, Pyridoxine B 6, and Cobalamine B12 acts as an analgesic.
Thiamine deficiency can take the form of Gastrointestinal Beriberi, causing almost constant diarrhea. I bought a chamber pot and kept it handy. I couldn't make it to the bathroom.
Thiamine deficiency can affect appetite. One can lose their appetite or become ravenous or swing between the two extremes. Thiamine deficiency can also cause weight loss and muscle wasting. I lost weight then muscle within days.
Yes, I understand. I lived through it despite my doctors not recognizing thiamine deficiency outside of alcoholism because it presents differently. I was so desperate, I took over the counter Thiamine in the form Thiamine Tetrahydrofurfuryl Disulfide (TTFD) and felt improvement within an hour! It was like magic! I also took the other essential vitamins and minerals. Talk to a dietician.
Talk to your doctor about testing for thiamine deficiency. Definitely.
Keep us posted on your progress! Best wishes!
Hi Everyone,
I’ve just been diagnosed with celiac disease, almost by accident. I went to find out if I have ataxia, as that is something my mother has. I believe my sister does too, though she hasn’t been diagnosed with ataxia. Anyway, lab tests showed I do not have ataxia, but I do have celiac disease. I have to admit, I was totally blindsided. I’ve never had any symptoms whatsoever. I am 58 years old and struggling to understand. My PCP did not put me on a strict gluten-free diet as I expected she would. Instead, she just said to continue as I have until now, since I have no symptoms. This doesn’t sound right to me. If you’re an asymptomatic celiac disease patient like me, I’d love to hear from you.
Thank you ! Good to know I am not alone. I am currently on metformin and rybelsus for my diabetes. The last week or so my sugar has been so uncontrolled, more so than before. I am very frustrated and discouraged by all this. I have had days of 317 to a low of 64. I feel terrible. I am getting back on the gluten free wagon, just taking some time, and not seeing results and relief as fast as I had hoped. My stomach is just a mess, sometimes worse than others
Thought was finished with this but a friend just sent email saying she takes Tirosin liquid levothyroxine which has no fillers (mentioned by Pgetha above). Friend's doc sends script to one of Tirosin's direct-mail pharmacies. Looking that up, government insurance (Medicare/Medicaid) doesn't cover (as Pgetha wrote above). But if use one of their direct-mail places three month supply is $57/month. Researching that, happened to learn Yaral also makes a generic gluten-free levothyroxine.