Possible Hormone Imbalance

[lil'chefy]

Some of you may have read some of my prior posts under different topics. Not sure where to start...I was diagnosed with DH, via skin biopsy @ 13 yrs. old. Until recently, I have been on 100mg. of Dapsone everyday since then. I am now 36 and haven't been taking Dapsone for a little over a year (only gluten free since late November 2011). At first not taking Dapsone I thought my disease must be a misdiagnosis or in possible remission, that's when I discovered this forum. Previously I didn't realize that the gluten could be working on my insides silently. Over my lifetime I have been given the diagnosis of ADD, having the markers for lupus, a few bouts of Ebstein Barr, profound nasal allergies, Renaud's syndrome, and have always fought my weight. When I was a little girl I would just get nose bleeds that were so bad (every day) my Mom would eventually just tell me to hang my head over the toilet and let it drip. This is going to be a long post, there is no other way for all of you to get an accurate pic of my life unless I tell you a lot of information. I was never anemic, but always on the brink (numbers were low). I have always been hypoglycemic. When I was a young adult I got profound stomach pains. If I was driving I would have to pull over the pain was so bad. Over the course of my life the stomach pain has come and gone. I had previously attemted and failed the Gluten-Free lifestyle several times. I had no education about the diet and my Dr.s at the time didn't think it was possible to live gluten free and so subsequently didn't give me a clear idea of what a gluten free diet was (not sure we could have done it anyway; my parents were on welfare at the time of my diagnosis)nor did they tell me all the other factors involved in my health. I don't know if it was the Dapsone or gluten, but when I started taking Dapsone, I went from being an A-B student to barely getting by. In hind sight its frustrating that my Mom didn't realize the correlation! Anyhow, fast forward.....

I became pregnant with my daughter when I was 29 years old. My OB took me off of Dapsone and I attempted to be gluten free (though I am sure that I wasn't). My baby was not growing properly inside of me. I was gaining weight as scheduled, but my baby wasn't getting the nutrients that she needed. I was put on bed rest and a high fat high protein diet. She still wasn't growing as she should have been, not until the very end of my eighth month. I had previously lost 100 lbs., and so my OB thought for some reason that my body was feeding its own fat cells and not my baby. My baby was borm weighing a blessed 6 lbs. She has severe vascular problems, is almost clinically blind, had a strawberry hemangioma that blocked her airway, and is PROFOUNDLY intolerant of milk products (it makes her vomit). I should also mention that I was unable to nurse my daughter. I was not producing adequate milk supply no matter what I did.

I got pregnant with my son at 32. By all accounts I had a normal healthy pregnancy. My OB this time had me continue to to take 100 mg. of Dapsone while I was pregnant. My baby grew as scheduled inside of me but I started having a lot of vascular trouble. He was born a normal weight with little complications. Again, I wasn't able to nurse my son. I had no milk supply After I delivered him I learned of this forum and have become an investigator ever since!

After I had him, I have never been able to lose that last 10 lbs. I tried running 3 miles a day on only 1000 calories a day, for like 6 months. I couldn't lose. I went on Adipex, a weight loss drug; I couldn't lose. I was still eating wheat! I started getting these crazy random fevers of 102. No other symptoms. I was diagnosed with lupus markers, but no lupus. The Dr. never figured out what was wrong, but symptoms went away. I started having dire stomach pain again (but this time with this WEIRD SLOSHING inside my gut) still have it. I had an endoscopy. No sign of celiac (6 sites were biopsied). I had a blood test, no celiac disease was found, though I always have elevated A&A. I know I have celiac, as I have had three confirmed skin biopsies. I went gluten free for good and took myself off of Dapsone. As soon as I did, that the fevers went away, and I could stop taking meds for ADHD, but now I think my hormones are really bottoming out. I have been having 10 day cycles, mood swings across the board, I was having extreme tiredness, 1 swollen eye, extreme uncontrollable coldness, terrible foot stiffness/ pain, and have been totally unable to lose the weight (10 lbs.) no matter what I do! Could my hormones and all these changes in my body be the years of gluten, or am I trying to pin it all on gluten? Now I am having hot flashes! At 36! I am soooooooo frustrated. I just want to be a normal person!

[nmull #newly diagnosed]

Hey, im sorry to hear about all your troubles I have had all of the same exact symptoms. I have been gluten free since February this year. When I accidentally ingest gluten, I get a rash, depression, stomach pains,migraines, mood swings and so tired I can't get out of bed. I need to add that I am also on thyroid meds for Hypothyroidism. We are the same age and I am night sweats too. Have you ever had your thyroid checked? Also, have you did a cleansing diet? ie. paleo

[cavernio]

I was missing periods and had like 40 day cycles, a couple months gluten and dairy free and they're 28 days.

[lil'chefy]

I was missing periods and had like 40 day cycles, a couple months gluten and dairy free and they're 28 days.

I guess I am wondering, my cycles have been 10 days, right now they are actually normal, but the hot flashes are freaking me out. Are these signs of early menepause? I just got an ultra sound of my thyroid. I passed out a couple times with my kids while we were alone! I haven't gotten the results back yet from ultrasound, but I am not cold anymore. Now I am hot!I really feel like I am going nuts. The swollen eye thing is the weirdest. I have been dairy/ gluten free for at least 8-9 months. How long will it take to clear out my system? I am getting ready to have a saliva test for my hormones in a few days. My thyroid numbers come back on the low side of normal, but when I started getting the hot flashes is the same day I got my thyroid blood panel done. Can thyroid fluctuate from hypo and back and forth?

[nmull #newly diagnosed]

My thyroid fluctuates up and down. The doctor took me off my hormones for 6mths and then I had to be put back on Synthroid. Fluctuating could be Hashimotos or at least thats what my Doctor tested me for.

These hormones and Celiac can make you feel so crazy! I am so thankful for this forum because I don't feel so alone reading others post

[eatmeat4good]

I guess I am wondering, my cycles have been 10 days, right now they are actually normal, but the hot flashes are freaking me out. Are these signs of early menepause? I just got an ultra sound of my thyroid. I passed out a couple times with my kids while we were alone! I haven't gotten the results back yet from ultrasound, but I am not cold anymore. Now I am hot!I really feel like I am going nuts. The swollen eye thing is the weirdest. I have been dairy/ gluten free for at least 8-9 months. How long will it take to clear out my system? I am getting ready to have a saliva test for my hormones in a few days. My thyroid numbers come back on the low side of normal, but when I started getting the hot flashes is the same day I got my thyroid blood panel done. Can thyroid fluctuate from hypo and back and forth?

You should ask for the thyroid to be tested for Hashimoto's and Graves antibodies. With Hashimoto's it is common for the thyroid to go from hypo to hyper until it burns itself out so to speak and stops working. The feeling cold all the time and inability to lose weight would be consistent with Hashimoto's too. Hashimoto's is common in Celiacs.

For those with DH, the intestinal biopsy is most often negative, just as yours was, but nevertheless, since you have a diagnosis of DH, you are Celiac. It's just that the antibodies are in the skin.

You may have other intolerances. Soy causes my face and ankles to swell, especially the eyelids. I'm Still finding out after 2 years of being gluten free what I am intolerant of. I have DH and Hashimoto's, but I also have other food intolerances. You may too.

I hope you can get the antibody tests for Hashi's and Graves to be sure your thyroid is functioning properly.

Is your DH under control now?

I'm so sorry you weren't told how seriously people with DH have to be about being gluten free. It makes all the difference in the world.

So glad you found this site and started doing your own investigating. Sounds like you have come a long way!