New Here!

[LauraBeth]

Hello! I've been reading the boards here for the last few weeks and finally decided to sign up so I can chat with everybody! I haven't been offically diagnosed with Celiac yet and I am just so frustrated. I'm 23 and have felt sick for as long as I can remember, just nauseus and overall "yucky". My senior year of high school though, I started getting really bad- super sick to my stomach all the time and really, really tired no matter how much sleep I got, and it has just gradually gotten worse. I started getting bad headaches, numb feelings in my face, horrible tingling/ twitching in my legs at night, eyesight worsening and worsening, etc. The worst of it though has always been, and still is, the severe exhaustion that I just cannot seem to kick.

The doctor I had for years ran a few tests, but never anything she should have. Everything always came back normal and she would say "you're fine. You are too young to have anything wrong with you- it's probably just hormones." I finally got FED UP and found a new doctor about a year ago who has been wonderful! I found out after my first visit that my B-12, Vitamin D, and ferritin levels were all horribly low. She got me started on B-12 shots, an Rx vitamin D weekly, and a liquid iron supplement every day. All of those levels are now normal but I still feel exactly the same. I did find out that my B-2 and B-6 are low and now I take a B complex too.

She recently (about a month ago) had the thought that it might be Celiac and first had me do the genetic testing, which came back with a high chance of developing Celiac, said 10x? I can post those results maybe for some more clarification from all of you. She said I should start the gluten free diet right away, which I did completely and have been entirely gluten free for about 2 weeks now. I still feel horrible, but I know if I do in fact have Celiac, I won't get better this quickly. She had me come back for what she called "confirmatory testing" which was the IGG and IGA test (I believe that's what it's called). The problem is, I was told I did not have to be eating gluten for this test to be accurate, and I had been completely gluten free for about 5 days when I did the test, and it came back negative. I think I was given misinformation and indeed SHOULD have been eating gluten for the test to be accurate. Should I have it done again? I can post those results as well. Anyway, just looking for advice from people who have been here. I just want to get better and feel alive again. Thank you!!!

[LauraBeth]

Does anyone have any advice for me? I'm really at such a loss right now. Just to add, I have tested negative for lupus, rheumatoid arthritis (which my dad has), diabetes, no problems with blood pressure or cholesterol, normal abdominal and pelvic ultrasounds, I did have 2 abnormal stress cardio tests because I became too tired before I was able to get my heart rate up to where they needed it to be to test properly- abnormal stamina levels is what it said. My thyroid is normal every time it has been tested, which has been at least 3 different times. My sister has hypothyroidism so it would have been an easy answer but my levels are always right in the middle. I really think it must be Celiac- it is the only thing that makes any sense at this point. My dad also has what seem to be obvious Celiac symptoms but he hasn't been tested yet. My family is waiting for confirmation for me before they all get tested (mom, dad, sister, and possibly my 2 young nephews). Any thoughts on my situation at all would be tremendously helpful. Thank you in advance!

[sue1234]

Hi! I am new here myself, so don't feel I am able to give much advice or info. I wonder if they could do an endoscopy and get some biopsies. Your stomach would not be healed yet by any means.

Are you thin or have you lost weight? I also thought of a cortisol deficiency when you mentioned nausea and tiredness.

[LauraBeth]

Up until my senior year of high school I was very thin but I actually started gaining some weight around the time I started feeling worse. Up until then though, I actually struggled to maintain a healthy weight, everyone thought I had an eating disorder, even thought I wasn't really concerned about my size at all, it never really even occurred to me. I just ate when I was hungry. At 17 I was 112 lbs, now at 23 I'm about 135. I'm 5'2".

[Skylark]

Hi Laura Beth and welcome.

Five days is not enough to throw off the celiac blood tests. Thing is, they have high false negative rate (probably about 20%) so you could still be celiac. With your positive genetic test the thing to do is stick to the diet and see if it helps all your issues. It will take your body a while to heal since all your vitamin levels were low.

The one thing you could ask for is a biopsy, but you have to go back to eating gluten. Two weeks is not enough time to reverse the damage if you go right back to your old diet. It is possible you will have a celiac biopsy even without the blood tests. Thing is, you do not have to have any positive test results at all to try the diet strictly for a few months and see if it works so it's really up to you.

What test results do you have so far?

[LauraBeth]

Skylark, thank you for the reply. Here are my rest results thus far:

Prometheus Celiac Genetics

Celiac Risk Genes Detected: DQ2.5 (HLA DQA1*05:DQB1*0201) and other non-risk alleles.

Catagory 4 DQ2 heterozygous, Increased risk 10x, Realtive risk high

Lab Report: tissue Transglutaminase IGA, IGG

TTG Antibody, IGG: <3 U/mL

Reference Range: Negative <7, Equivocal 7- 10, Positive >10

TTG Antibody, IGA: <3 U/mL

Reference Range: Negative <5, Equivocal 5- 8, Positive >8

Can someone please shed some light on this for me? Thank you!!!

[Skylark]

OK. You have one copy of a gene that is strongly associated with celiac, called DQ2.5. As your results say, people with one copy of that gene have a ten-fold higher risk of having celiac than the general population. The test means that at least one of your parents has at least one copy of DQ2.5 and your sister has a chance of having it. Really, everyone should be screened.

You have only had one of the celiac blood tests, anti-TTG. There is also anti-gliadin and anti-endomysial antiodies which might come up positive. False negatives are not uncommon so you might want to push for an endoscopy since you have so many symptoms. Also, some celiac researchers have noted that people with DQ2.5 often feel better off gluten even if their blood tests are negative like yours.

With all your symptoms and genetic test results, it's very reasonable for you to go off gluten even if the doctor doesn't come up with a firm diagnosis at the end of the testing.

[LauraBeth]

Thank you, thank you, thank you! I appreciate your response more than I can say! I will discuss things with my doctor, but for now I am strongly adhering to the diet and hope my symptoms will begin to improve. This forum has been a complete god-send, honestly. Thanks again.

[Skylark]

Good luck. I really hope you feel better. The diet has been amazing for me.