Still Lost After Years Of Searching For An Answer....maybe You Guys Can Help Me.

[SajaWilhelm]

Hello everyone!

Hope you are having good days. I found this forum while I was yet again Googling furiously today. I do not have diagnosed Celiac disease. I was tested by blood test about a year ago, and although I can't find my test results at the moment I remember it was borderline, my antibodies were high but they said it was negative for Celiac. Before then I had been eating gluten-free for 12 months, reintroducing gluten maybe 1-2 weeks before the test.

Anyways, here are the symptoms I have....I'm just at a loss of where to turn next. I've seen so many drs., so many specialists, tried so many medications, so many diets. I'm only 26 years old, Female, BMI 23 (normal weight). I would do anything for just a partial answer on what could be causing all this:

Hyperthyroidism at age 15 (complete thyroidectomy due to stage 0 tumor on thyroid), now regulated

Very low weight growing up

Migraines since age 7 or 8

Frequent headaches

IBS-D (IBS-C as a child, real bad)

Frequent nausea/bloating/feeling full too fast

Severe menstrual cramps, possible endometriosis or cysts

Stomach ulcers/gastritis when I take NSAID pain relievers only a couple times

Infertility (trying 5 years now)

Anxiety (this is kind of a chicken or egg thing, I'm sure it makes everything worse)

Hypoglycemia/sharp drops in blood sugar especially after carbs

Terrible teeth

Frequent sinus/ear infections

I didn't start my menstrual cycle until after my thyroid was taken out, so almost age 16. I was also extremely skinny. I rarely had more than 1 or 2 bowel movements a week, despite eating what was probably 3,000-5,000 calories a day. It was extremely painful and caused long term nausea.

Although, I don't really notice short term a difference when I cut out gluten. I feel better in general for sure. I can't tolerate hardly any dairy without IBS symptoms, even taking Align (which is amazing btw).

My mom found Celiac a couple years ago and that's when I took it seriously but my negative test results sent me back to square one.

Thank you for reading and I would appreciate any advice, thank you so much.

[cyclinglady]

I think you tested negative because you had been gluten free. To get proper results from a celiac blood panel, you have to consume gluten daily for 8 to 12 weeks. That is about 1 to 2 slices of bread or the equivalent daily. I am sorry hat your doctor did not tell you this.

For most of us here, it can take 1 to 2 years of being strictly gluten free before feeling well.

[cyclinglady]

Post your tests results if you can.

And.....welcome to the forum!

[LauraTX]

Your tests for Celiac are not accurate as you did not have solid gluten consumption in the period before.  I highly recommend seeking out testing again, and doing a full gluten-eating period before it.  Your other choice, if you don't want to go through testing and such, is to just cut out gluten and stick with it for a long time, at least 6 months strictly gluten-free, and see if it makes an improvement.  If you do that and decide that it does help and you want a diagnosis, you will have to go back on gluten again.  So, unless you cannot tolerate it, I recommend testing now.