Hello everyone, I hope you'll bear with me because this may be a long post. Feel free to skim, I just want to make sure I provide enough information.
I have had health problems since I was around 16 (I am now 21). I first started off with gastrointestinal symptoms, chronic nausea and heartburn/indigestion. I also have what they like to call IBS---my bowels alternate between constipation and diarrhea but are never truly "normal" although there is a "normal" for me. My heartburn is pretty well controlled by Nexium now. I also developed hyperthyroidism around this time, but that was deemed to be transient and I have not had any problems since. When I got to college, my health got a bit crazy. I got diagnosed with pernicious anemia (autoimmune B-12 deficiency), endometriosis, adenomyosis, and interstitial cystitis. I also have some form of tachycardia which is now controlled by a beta blocker. I also have had lifelong allergies, eczema, and bad acne since puberty that has not really let up.
Anyway, after my 2nd laparoscopy for endo within a year, my menstrual pain had decreased substantially but I was still having other pretty severe symptoms during my period, mainly horrific nausea, loss of appetite and severe fatigue. I went to see an acupuncturist because I had reached the point where I was desperate and willing to try anything... Anyway, my naturopath told me all about gluten intolerance, how I might have it and that would explain all the autoimmune issues blah blah blah. He convinced me to order Cyrex labs, and the results came back that I am "gluten intolerant". I gave up gluten a little over a month ago, and am careful to avoid cross-contamination, do everything I can.
I haven't seen an improvement, but I realize this could take time. So I didn't really think anything of it. But now I'm reading a lot that Cyrex labs is probably scammish. So, do I have gluten intolerance or not? Feel free to ask any questions... I am very confused and don't know what to do.
I don't know much about Cyrex either, but I have heard some conflicting reports about their high positive rate too. Since you have not had relief of your symptoms, going back on gluten to get blood tests done should not be too uncomfortable....hopefully. That is if you decide to do further testing. The blood tests to request from a doctor are:
Ttg IgA and ttg IgG
DGP IgG and DGP IgA
Total serum IgA
AGA IgG and AGA IgA
If you decide to stay gluten-free and not test now, you are correct that you should probably give the gluten-free diet more time. Most people recommend 3-6 months.
My "C" did not improve until my hypothyroidism was being treated. Some of your symptoms sound like thyroid problems (they often re-occur) . If you want to get it checked, I would recommend requesting:
TPO antibodies - should be very low
Free T4 and Free T3 - should be in the 50-75% range of your labs normal reference ranges
TSH - should be near a 1
Get copies of all of your labs and research your results. Some doctors do not read or understand labs very well so the patient needs to look out for herself.
If you don't trust the labs that did your testing you could go back on gluten for about 12 weeks and get a test done through your PCP or a local hospital. But if you can get a copy of your actual lab results with the types of tests done and post them here, we can help you interpret them.
As to menstrual related issues, I was having the same thing when I was 16-18. I also have an IBS diagnosis that I think is still valid (different symptoms than when glutened) and as much as I've seen other people have issues with it, because my constipation/diarrhea cycle was synced up with my menstrual cycle I talked to my gyno about going on hormonal birth control and that helped straighten those issues out except when I would eat gluten. So we decided that was a hormonal issue. Every body is different so it might be helpful for when you're trying to figure things out to keep a food and symptom journal so it's easier to track what causes what and to notice patterns.
I left out some info from my original post but didn't get a chance to edit it.
When I first developed GI symptoms back in 2009, I had the celiac panel done probably at least once (I have now had it done probably five times ). I had an endoscopy not specifically for celiac, that is when I got diagnosed with GERD. My gastroenterologist did a biopsy for celiac which was negative, although apparently I had flattened mucosa that made him suspicous. I get my thyroid tested pretty often because of my history. I have always had good results and even see an endocrinologist occasionally. I agree that it is probably hormonal for a lot of it.
I have been on every type of birth control imaginable: minipill, low dose, normal oral contraceptive, the ring, Mirena, you name it, I've tried it. All of them have horrific side effects for me, I simply cannot tolerate birth control. It is not an option. Instead I have had the two surgeries (one from a top surgeon in Atlanta) which helped a bit with the pain, and I take other medication like Zofran during my actual period and just lay low...
Thanks, I had read what they said about Enterolabs/Cyrex, and that is what made me worried. I guess I will give it more time, see if I see any improvement after a long period of time (at least 6 months) and pay attention to whether or not I ever experience "glutening" symptoms.
I think I've had all the proper testing done, like I said, I've had a biopsy and what I assume to be the standard bloodwork around 4-5 times.