My Whole Life Makes Sense Now

[julieghoulie]

Okay, where do I begin... I'm 25 and I've just always felt "bad" for as long as I can remember. Plenty of memories growing up involve me wondering why my stomach was hard and bloated like I had a basketball beneath my shirt, when the other kids seemed fine. That issue has plagued me my entire life and made me so self-conscious. I've always been either slightly overweight or normal weight from year to year, so I thought I was just fat, but it still didn't explain the extreme, painful stomach distention, fatigue, cramps, diarrhea, etc. I would complain about it and go to doctors but they always just said I needed more fiber and probably had IBS (from what I gather from all of you, you've heard that a billion times and so have I). I can't remember a day in my life where I felt rested, bright, and healthy. I was always depressed and had ADD.

When I was about 17, I began experiencing exercise-induced anaphylaxis. Whenever I exercised moderately I would break out into an itchy red rash, and full-on cardio would actually cause me to go into full anaphylactic shock. I kept exercising in the following days because I didn't realize it was the trigger until the 3rd time, or rather was in denial of it. I would have died that first time if my mom hadn't had liquid benadryl on hand, as quickly as everything swelled closed. I went to several allergists and none of them could help me with this issue, either. So I had two unsolved issues now, and no idea where to turn. We thought that birth control might be an issue because of the extra hormones (we read hormones could be an issue), so I stopped taking them. A couple of months later when I was no longer terrifed of exercising, I tried again and did not experience full-on anaphylaxis, but still broke out into an itchy red rash all over my body. The rash has happened during exercising ever since then, but only about half of the time.

Fast-forward to last month. I suddenly started experiencing heartburn, which I'd never ever had before, coupled with shortness of breath. It was so bad the first night that I thought I was going to have a heart attack. The symptoms persisted moderately for two weeks after that, along with nausea, extreme fatigue, ravenous hunger, and cramping (both stomach and what felt like my uterus). Then more weirdness: I was suddenly allergic to latex and had a horrible reaction to it, when I've never had a problem in all my life.

During all of this I was late for my period, and suddenly realized that all of these symptoms could be related to pregnancy. I was excited because my husband and I really want kids, although we haven't been trying yet. But then I took a test and it was negative. For the next 5 days I tested every morning, all negative, and I was so frustrated because I just knew I was pregnant with all of these insane symptoms. Then came unbearable sciatica pain, which I've also never experienced. 2 days later all of the symptoms and pain were still there, and then suddenly intense cramps and nausea were ripping me apart. Sorry if this is graphic but the only other time I've experienced so much pain and heavy bleeding was when I had an early (4-5 weeks) miscarriage about 2 years before. I was confused and heartbroken and couldn't get out of bed for a couple of days because of the pain and exhaustion. I probably should have gone to the doctor to verify whether it was a miscarriage or not considering I hadn't gotten a positive test, but I couldn't bring myself to face it.

A few days later, I remembered I'd read a post on a pregnancy message board about a woman with celiac disease having multiple miscarriages. She was talking about how much untreated celiac can complicate pregnancies. So anyway, I finally researched celiac and I was so angry and sad and happy at the same time, realizing this was probably the answer to my life of pain and discomfort. I screamed and cried for a while, then immediately cut all gluten out of my diet. A few days later, I felt like a different person. Still not great but the difference was remarkable, especially the absence of any damned BLOATING!!!!!!! Which has never EVER gone away before.

I was (and still am) floored. As of today I'm on my 8th day of zero gluten, and every day since then I've woken up expecting to look in the mirror and see a distended, pregnant-looking stomach like always, but it's flat now. I've been dropping a pound every day without even trying, just obsessively checking everything for gluten and making sure I don't ingest any. I can't believe it is THIS simple. I'm still pretty mad about it, that I didn't know sooner. I keep wondering how different my life might have been. But I'm just thankful I'm only 25. I've been reading how so many people don't find out until their kids are my age, and that makes me so sad.

To explain the reason I brought up all of my anaphylaxis and menstrual/miscarriage problems and sudden-onset latex allergy, I've been researching like crazy to find a link between them. Thinking back to all the weird stuff I've been through, I realized there has to be a connection for me.

And sure enough, I found research stating, "The most severe response to gluten in celiacs is exercise-induced anaphylaxis, attributed to omega gliadin that is a relative of the protein that causes celiac disease" !!!

But then I thought, well how come this doesn’t happen to me EVERY time I exercise while contaminated with gluten, which has been the majority of my life? Maybe because of this, which I have summarized from what I've read: "Female sex hormones support a more robust antibody response to allergens and autoantigen. An autoimmune condition can be the causative agent which triggers an allergic response to progesterone, due to the effect of progesterone receptors on the immune system. Being a steroid hormone, progesterone also has the potential of influencing the body's immune responses to various objects, which can cause an allergic response."

So my hypothesis is that when I have gluten in my system, causing an autoimmune response, and then have higher than usual levels of progesterone (birth control, certain points in the menstrual cycle, or pregnancy), my immune response is altered to the point that I react to things I normally wouldn't. The only way I'll ever know if this is true and that all of these problems have been caused by gluten, is to make sure I never ingest it again. And then wait and see what happens.

Since being gluten-free last week, I have run around like crazy with no sign of a rash or anaphylaxis, but I'm not sure of my progesterone levels so I'll have to experiment at every point in my cycle. I haven't been on birth control again so there is nothing to effect the natural rise and fall of progesterone. It will be interesting to see what happens. If I no longer have any type of reaction then it was definitely the gluten AND progesterone working together, not just one alone.

Anyway, had to share this because I've never read an experience just like mine before, and if anyone else is going through something similar, hopefully they will find and read this. It's no way to live... having no clue what is wrong with you, getting no help from doctors, and having to convince yourself that it's "just how you are" without hope of ever feeling better.

[GFinDC]

Hi Julie,

Welcome to the forum! Thanks for posting your story, I am sure it wil help somebody. If you do decide you want to know for sure if you have celiac disease, you should get tested right away. The antibodies drop off after going gluten-free and the tests don't work then. It is much harder to get tested later as you would need to start eating gluten again for a period of time. That might be very unpleasant to have to do.

[IrishHeart]

Welcome...... and yes, your symptoms do indicate a gluten intolerance of some kind.

I would suggest being tested for Celiac ASAP which requires you to be still consuming gluten.

I am glad you feel better off gluten, but you state "I can't believe it is just this simple".

Well, many people with celiac have complications and associated conditions and other autoimmune diseases---it is not really all that simple.

If you do, indeed have Celiac, you will want to know this for sure--- so you receive appropriate follow up care.

[AandGsmomma]

Im so glad you found an answer. I would still suggest seeing your doctor.