gluten withdrawal after a year

[adhdgi]

i’ve been gluten-free for a whole year after being diagnosed almost by mistake through blood test.

i was and still am completely asymptomatic, no GI issues, no nutritional deficiencies, perfect lab results except for tTG.

i have to say i’ve always been skeptical about this diagnosis, i was at my lowest weight back then, struggling with a restrictive eating disorder and starving myself daily and it went mistaken for malabsorption and ditching gluten didn’t cure me, but i still did it.

but that’s not the worst part, i knew going gluten free can be hard at first, but it’s been over a year and i still feel like s$#&: i had to start taking meds for anxiety and depression, i experience heartburn, constant fatigue, irritability and joint pain, my once regular, light and painless period only came twice in the past 14 months and it was the worst experience ever (i got checked for this, apparently my hormones and ovaries are fine)

i’ve been told it’s because of gluten, but i haven’t had gluten in a year and it didn’t happen before, no doctor seems to listen to me, i’ve been told i’m making it all up even my family to the point i don’t even know what’s real and what’s not, i don’t feel real or alive either.

i’ve spoken with a friend who has celiac and she told me she doesn’t think i have even had problems with gluten before, but she’s not a professional or anything so i don’t know what to believe.

has anyone ever had similar experiences before?

[trents]

What was your tTG-IGA score and what reference range was used for negative vs. positive? There are some other medical conditions and some meds that can generate elevated tTG-IGA antibodies. Usually, when it is caused by non-celiac factors the score is not high, however. Were any other antibody tests run for detecting celiac disease besides the tTG-IGA?

Edited August 10, 2022 by trents

[Scott Adams]

Welcome to the forum!

Many people with celiac disease fall into the asymptomatic category, and for those in this group it seems they are the most likely to question their diagnosis. Unfortunately, even thought you may not have obvious symptoms, the health risks remain the same should you have celiac disease and continue eating gluten.

Feel free to share your test results if you are able to, as they would reveal more about why your doctor made the diagnosis.

Also, if you eat in restaurants, even off of gluten-free menus, it's possible your still getting gluten in your diet, and if so, it could explain why you are not feeling well.

[knitty kitty]

@adhdgi, welcome to the forum!

Thiamine deficiency can cause anorexia and also bulimia.  I've struggled with both of these due to Thiamine Deficiency.  

You said you had anxiety and depression, heartburn, constant fatigue, irritability and joint pain.  These are all symptoms Thiamine deficiency.

And the surreal feeling...

"i don’t even know what’s real and what’s not, i don’t feel real or alive either"

...that's thiamine deficiency.

I became Thiamine deficient prior to my Celiac diagnosis, and have experienced all these symptoms and more. 

My doctors did not recognize the deficiency symptoms of thiamine outside of blatant alcoholism.  My doctors  and my family accused me of making stuff up and being a hypochondriac, so my heart goes out to you.

The World Health Organization recommends taking Thiamine Hydrochloride, 500-1500mg per day for several days.  If improvement is seen, thiamine deficiency can be diagnosed.

When I tried this, I had improvement within hours.  And I continue to supplement with thiamine hydrochloride, Allithiamine and Benfotiamine , fat soluble forms of Thiamine that also are beneficial.  Thiamine is nontoxic, safe in high doses, and water soluble (so you per out any excess).  

Thiamine works with magnesium, so adding a magnesium citrate supplement is beneficial.  A B Complex supplement containing all eight essential B vitamins is beneficial as well, because the B vitamins need each other to work properly.  

Vitamin D deficiency can mess up periods big time.  

Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.  

Keep us posted on your progress!