Really Ticked Off At Doctors Right Now

[xjrosie]

A little background on me: now 34 years old, with two of three of my kids diagnosed with celiac. Those two kids also (separately) have hypothyroidism and diabetes type 1. Before their diagnosis, I had no clue what Celiac Disease was. Now that I've experienced it, I'm kind of ticked off. I think I might have it, and I think I've been suffering with it my whole life.

When I was younger, my parents didn't really feed me, so I was very underweight and didn't have any actual symptoms that I could think of. But when I finally moved out at 16 and was introduced to food, I started having problems. I couldn't keep weight off (and I was not a big eater, I just ate regular meals). I began an unending stint of anemia so severe that when I tried to donate blood they told me to see a doctor immediately. I haven't been able to donate blood since I was 18, even though I take iron supplements. I had to quit sports because I couldn't breathe well and was getting depressed. I never felt good after eating, never.

As soon as I had my first daughter, I kind of went off the deep end and tried to get in shape after some nasty comments from my ex about my figure. I pretty much ate cucumbers and grapes, drank water, and took vitamins. So that didn't help. But when I met my husband, I started taking care of myself. Eating balanced meals regularly, exercising properly and such. I started gaining weight again. I thought this was my only problem. Between 2000 and 2003, I went from 145 pounds to 275. I paid so much money to different programs to lose weight. I tried every type of diet under the sun. Finally I had gastric bypass surgery. I did great, I lost the weight. Shortly after, I divorced and started dating someone who I can see from hindsight was pressuring me to "stay pretty" so I went back to barely eating to keep the weight off.

Now that I am single, I have been eating regularly again (without so much exercise, but I'm working on it) and I have gained weight back. I'm up to 210 after being down to 135 after my surgery. Needless to say, it doesn't make me feel good. But my daughters were diagnosed with Celiac, and the doctor said they must have got it from me (my oldest doesn't have the same dad as my younger two) since I have hypoglycemia already there are no indications from the dads' sides of the family of any autoimmune problems. I started thinking about my history.

My brother and my best friend both told me that I have complained about not feeling good as long as they can remember. I do remember laying down on my friend's couch lots of times because I felt like crap. It was always after eating, and we usually ate pizza when we hung out.

I even called my ex-husband and asked him. He said he can't remember a time where we had a meal and I didn't complain.

Even my co-workers (when I had some) used to make comments about how I was always "not feeling good."

I have ugly, white bumpy patches of skin all over my arms. I have headaches all the time (and always have, that I can remember). Bowel movements are irregular and urgent - and I usually only have about two a week (not fun). It's been that way since high school, except after the surgery. It's hard to tell whether my depression could be a symptom, because I've been bipolar for so long and they thought it was caused by my upbringing.

I was even treated in high school for "excessive gases" that were working away at my intestine.

Anyway, now I'm thinking that I could have had Celiac Disease this whole time, and I altered my body when all I probably needed to do was lay off the gluten! It totally makes sense to the people in our lives who have chosen to become educated about Celiac, because they've seen me in the past, and hear about the symptoms when I tell them what it can do.

As soon as I get insurance again, I'm going to get tested, but for now, it's just my theory. But it just makes me upset that I have been dealing with this for almost 20 years. Eighteen years of feeling like crap, feeling like I look like crap, hiding myself, wanting to not be around because I'm so depressed, and all I needed to do was change my diet. I feel like I've been robbed, because I have such an uphill battle now to fight to get back to healthy. Grrr!!!!!

[rosetapper23]

Be thankful that you found out now--and not 20 years from now. Many of us on this forum did not discover the link to celiac until we were in our 40's, 50's, and 60's. We also had led tortured childhoods and adulthoods because no answers were forthcoming from the numerous doctors we saw about our unending list of symptoms.

That said, I hope that you're planning to follow a gluten-free diet from now on. You mentioned being tested when you get insurance, but if you follow the diet, you'll test negative for celiac. Since your symptoms fit closely with a diagnosis of celiac and you have two children with it, I don't see why you would bother with testing. Others on this forum might disagree with me, but it sounds as though you desperately need to go gluten free immediately. Believe me, it won't be the uphill battle you're expecting--it'll be downhill now that you know (or suspect) what has been causing you to be so ill. Very shortly, you're going to feel great!

I am SO very glad that you have finally figured out what is wrong.

[ciamarie]

All I wanted to add is that I agree with rosetapper23. Don't wait until you get insurance to start eating gluten-free, and after you're eating gluten-free any test (except genetic) would come out negative. And many of us (including me) can look back and wish we'd have known sooner...but we're on our road to health now. That's what is important.

[Skylark]

Yeah, a lot of us have similar missed diagnosis stories. It sucks. I was bipolar too before I got off gluten.

Before you go gluten-free you do have some testing options. You could get a home test kit. Open Original Shared Link Some cities have university celiac centers that offer free testing.

If you can afford it, you can probably get a celiac panel though Open Original Shared Link This would be a full celiac panel.

Open Original Shared Link

This less expensive test is less thorough but it is a new and very sensitive celiac test.

Open Original Shared Link

Once you've done either or both, go gluten-free and don't look back! There is a chance of false negatives, but it is good to have an idea of whether you might be celiac rather than gluten intolerant.

[xjrosie]

I've slowly started to go gluten free. My kids already are, but with all the food I have that is not, I can't afford to waste any. I am attempting to sell my excess food that we can no longer eat to a friend of mine, which will in turn buy more gluten-free.

I am thankful that I found out now, but if I had known beforehand, maybe I wouldn't have had gastric bypass. Because of that surgery, there are so many more foods now that I cannot eat simply because they don't digest, not because I'm allergic.