My Wierd Story...

[Smunkeemom]

My 3 year old has been gluten free since May of 04, she got very sick and has a really long story that I won't go into. My 4 year old and I both got the blood test when she (my youngest) got diagnosed, and they told us that our results were high but that was probably because we were "related to someone with celiac". I got my 4 year old a biopsy and it was neg. Her doctor said that she has celiac but it wasn't "turned on", so we waited it out, in September of last year she started losing weight and having problems, so I put her on the Gluten free diet. She is fine now.

I went back a few months ago and called the doctor to find out exactly what our tests said, she said that I "have Celiac, but it wasn't turned on". I don't know what that means.

I have been sick for at least 7 years, and the more I am reading the more I think it's due to celiac disease and maybe I don't have "typical symptoms".

I have been gluten free for under a week now, and I was thinking that maybe if I posted my symptoms you guys could tell me that I am doing the right thing.

I bruise really easy, I have severe hay fever type allergies, chronic sinus infections, chronic UTI's (which my 4 year old had too until going gluten free, they never did find a cause for hers, or mine), seizures, dizzy spells, anxiety, trouble concentrating, depression, joint pain, bone pain (it's like my bones actually ache), migraines, "bathroom problems" (yeah you know... both), and the last month or so, I just don't feel good after eating gluten-filled meals (like chicken fried steak and gravy) I get bloated and stomach flu type symptoms, and then the next day I feel hungover.

I am going to stay gluten free for at least a year and see how it goes. I figure even if it doesn't fix anything I got going on, I should be anyway right?

[Guest nini]

I just don't understand the concept of waiting until it is "turned on" before implementing the gluten free diet.

To me if someone shows the markers for Celiac, the antibodies or whatever, they should be gluten-free as a preventative measure. What is it with the medical community not wanting to practice PREVENTATIVE health care? Is being off gluten so terrible that they don't want to punish someone by putting them on the diet until it's absolutely critical?

Dearest... you HAVE celiac. If your blood test shows it you have it. Regardless of biopsy results. Biopsy results can be falsely negative. (but not false positive) All of your symptoms DO sound like Celiac and related disorders. I bet ya you will start to feel better gluten-free.

[Smunkeemom]

I just don't understand the concept of waiting until it is "turned on" before implementing the gluten free diet.

To me if someone shows the markers for Celiac, the antibodies or whatever, they should be gluten-free as a preventative measure. What is it with the medical community not wanting to practice PREVENTATIVE health care? Is being off gluten so terrible that they don't want to punish someone by putting them on the diet until it's absolutely critical?

Dearest... you HAVE celiac. If your blood test shows it you have it. Regardless of biopsy results. Biopsy results can be falsely negative. (but not false positive) All of your symptoms DO sound like Celiac and related disorders. I bet ya you will start to feel better gluten-free.

yeah, I remember calling her doctor because at first she said she "didn't have it" then she said her test was high because we were "related to a celiac", but when she got sick I decided that she did have it, so she went gluten free. I wish I would have questioned the doctor more.

We are still looking for a new one (and a new pedi too) since they wouldn't write us a note for school saying that Kathryn had celiac, because "her biopsy was negative" and I refused to gluten challenge her to do another one. I guess it doesn't really matter about the note anymore since she is homeschooled now, but I really would like a doctor without his head up his butt, if you know what I mean.....

[jerseyangel]

I have been sick for at least 7 years, and the more I am reading the more I think it's due to celiac disease and maybe I don't have "typical symptoms".

I bruise really easy, I have severe hay fever type allergies, chronic sinus infections, chronic UTI's (which my 4 year old had too until going gluten free, they never did find a cause for hers, or mine), seizures, dizzy spells, anxiety, trouble concentrating, depression, joint pain, bone pain (it's like my bones actually ache), migraines, "bathroom problems" (yeah you know... both), and the last month or so, I just don't feel good after eating gluten-filled meals (like chicken fried steak and gravy) I get bloated and stomach flu type symptoms, and then the next day I feel hungover.

I don't know what your doctor meant by the phrase--not turned on--maybe she was looking for weight loss and chronic D.

As far as your symptoms, a lot of them do look typical to me--I had the bruising, sinus, dizziness, anxiety, trouble concentrating, depression, and of course the bathroom issues.

I think you're doing the right thing by going gluten-free yourself. Give it some time--a year is a great idea. You've been sick for a long time, and as I am finding out firsthand, it takes a long time to undo all of that damage. Luckily, you've been involved here and of course with your daughter's care, so you know kind of what to expect. Hope it all works out for you--keep us posted!

[tarnalberry]

If you got the genetic test, it may mean that you have the gene, but it hasn't been triggered yet. Call back and ask for the specific test results and clarification.

[Smunkeemom]

I called and she said my IGa and IGg were high, and but that she didn't think I "had it" because I hadn't lost very much weight. I have decided she doesn't know anything.

Anyway, hubby talked me into going on the SCD diet...

I have no idea how he did it, but I am going to try that for a while and see what happens.

[Ursa Major]

Oh good grief, your doctor is as dumb as mine! Unexplained weight GAIN is also a very common symptom of celiac disease, too bad most doctors don't understand that. I kept gaining and gaining out of control, I was getting desperate! I hardly ate a thing, I tried diets, and nothing worked until I quit eating gluten and starches and a lot of other things.

ALL of your symptoms are VERY commonly caused by celiac disease. Every single one of them. So what you weren't losing weight, it doesn't mean anything. If your IGa and IGg were high, that means you have celiac disease, period. You need to be on a gluten free diet, or you will get sicker. Your kids need you, and so does your husband. And you don't want to get fibromyalgia, thyroid problems, cancer and a host of other possible complications due to untreated celiac disease.

You are doing the right thing by going gluten free. All the best with that, I know you won't regret it.

[Guest nini]

I was extremely overweight before my dx... If they had tried to tell me that I didn't have it because I was too fat I'd probably be dead now. Serious.

Since going gluten-free I have lost over 100 pounds... just yesterday went to visit my daughter's first daycare (from ages 1-almost 3) from before I was dx'ed, and they didn't recognize me at first! The women there were all shocked that I had lost so much weight.

I wish more Dr.s would realize that weight loss isn't the only sign.

[ianm]

I am another weight gaining celiac. Lost it when I went gluten-free. I really don't think I would have made it to 40 and I am 38.

[Smunkeemom]

you can gain weight because of celiac?!

I have been gaining for no reason the last year or two. Seriously I never had a problem before, I eat the same amount of the same foods, and even started going to the gym, but still I was gaining.. and it was a "puffy" type of weight too, people kept asking me if I was on prednisone or if I had high blood pressure, I just feel swollen....

I am feeling better and better about going gluten free, I think I might actually be normal soon (if I can remember what normal is, I have been abnormal for so long)

[Guest nini]

Absolutely you can gain weight with Celiac!!!! I was so skinny growing up, started putting on weight in my early 20's (when I started drinking beer) and after the birth of my daughter my weight SKYROCKETED. I was heavier after she was born then the entire time I was pregnant! It was extremely frustrating because I really wasn't eating that much food. I felt like I was starving all the time and always on a diet and even the dry toast and crackers the Dr.s told me to eat to calm my tummy made me hurl... and I had constant diarrhea. I couldn't figure out how come I couldn't LOSE weight with constant diarrhea and vomiting and not being able to eat. In some cases with Celiac, the body becomes SO malnourished it starts to hold onto the only thing it can to survive, and that is the fat.

[jerseyangel]

I was a weight gaining Celiac, too. Except for the period right before I was diagnosed (when I was the sickest ever) when I lost 15 lbs--I have always and still do have to watch my weight. After I went gluten-free, I immediately, in 2 months, gained back all of the weight I lost. I am also sensitive to dairy foods, and have found that cutting dairy out had really reduced the artificial bloat in my face and upper body. My face actually looks different than it did 2 years ago when I went dairy free. My shoulders and collarbone are more defined--and this is not weight loss, it's all of the puffiness that I always just had is gone.