Could This Be Celiac?

[Marleigh]

I'm sure you see posts like this all the time, so please bear with me. I really need some direction.

I was diagnosed with endometriosis following a surgery in January of 2007. The doctors told me that the adhesions, or scar tissue caused by the endo, had pretty much webbed all of the organs in my lower abdomen together. I have had gastrointestinal symptoms for as long as I can remember and my parents have told me that I could not drink milk as a baby (had to use soy formula). Following my endo surgery, I did a lot of research and read that many women with endo also have wheat sensitivities or celiac disease. I went for an allergy test (where they scratch your back with all the allergens) and "mild" sensitivities to wheat and shellfish were indicated, but the doctor (an allergist) said it was nothing to worry about. I've never had an allergic reaction to any food, as far as being unable to breathe, swelling, etc. But my digestive symptoms are miserable and constant. In some ways, I think it could point to celiac disease, but in other ways, I'm not so sure. I'd like to share my symptoms here and see if anyone thinks I should have a celiac disease test done. So here they are:

I am overweight by about 50 lbs for my height. I really struggle with losing weight because the constant GI symptoms make me feel hungry when I'm not, or I have alternating constipation and diarrhea. I have almost constant gas and bloating, especially after eating. The foods that seem to cause the most discomfort are processed or restaurant foods with additives like nitrates and MSG. Pasta seems to bother me, but I've never done any kind of elimination diet - so it could very well be something I'm eating with the pasta. Cereals which are very high in fiber, many fruits and vegetables, beans and corn all make the bloating/gas problem worse. Apples really bother me, of all things. Dairy typically doesn't bother me except for ice cream, which does give me pretty serious symptoms. Sometimes I wonder if the fruits/veggies are really what's bothering me, or if I'm eating something with them, like croutons or bread, and just not making the connection when I think back on it.

I also have fairly dry skin and dark circles under my eyes. I look tired all the time. I crave sugar and carbs like cookies, bread, crackers, etc. I have a constantly stuffy and runny nose, although not severe. I have severe PMS some months and can retain up to 5-7 lbs of water. I sometimes experience anxiety and "blue moods" for no reason.

I just have a gut feeling that I'm putting something in my body that it is allergic to, and it's causing all of these problems. Sorry for the long post, but does this sound like anyone else's experience with this disease, or should I focus on something else? Thanks in advance!

[MyMississippi]

Do a gluten free diet for 2 weeks----- if you are significantly better------ you might have celiac.

You could have more of a wheat allergy than you know (wheat is in EVERYTHING ) ----

It could be many things---- If I were you, I would start with getting ALL gluten out of my diet and see what happens. Take it from there -------

You WON'T get better, if you just keep on doing what you're doing. Something needs to change

[ohsotired]

Marleigh,

Take what I say with a grain of salt, as I am not a diagnosed celiac, but I do suspect that's what's wrong with me.

Your symptoms sound a whole lot like mine, only I go the opposite way with the weight (lost a bunch and can't gain). Alternating constipation and diarrhea, gas and bloating (esp after eating). I too seem to have problems with processed foods and esp. pasta - I remember going out to eat and having scallops and pasta - midway through the meal the bloating/cramping hit me like a jackhammer and I couldn't even get up from the table when it was time to leave.

Apples do seem to bother me too, but in a different way - I think they have too much natural sugar in them, as I get that 'sugar crash' feeling shortly afterwards if I haven't eaten something else with them. I also have issues with some vegetables - cauliflower and cooked broccoli to name two -they cause terrible bloating/gas.

With all that said, I put myself on a 'trial' gluten free diet 4 days ago, and I feel a thousand times better already. (And I've actually been able to go to the bathroom! That's not 'normal' yet, but I'm not sure I know what normal is, so....... )

I'm also keeping a food journal, to see if I can pinpoint the things that cause me to feel cruddy.

My plan was to try gluten-free for a few days to see how I felt, then gluten myself to see how I felt - and then head to the doc for testing.

I should have gone to straight to the doc for a celiac panel, but I just felt like I had to prove to myself that it was the gluten.

So now I'm concerned that even a few days of gluten free could affect the testing (and I don't really want to gluten myself!).

So I think if it was me in your situation, where you've already been back and forth with the doctors, I would just go for he celiac panel (and biopsy if necessary) and then immediately after testing start a gluten free diet and see what happens.

[ShayFL]

I had appendectomy when I was 13. It had actually burst and I needed exploratory surgery to make sure my organs were all o.k. I also got peritonitis. Anyway....around 18 I started having horrible gas/bloating/pain all of the time. Especially when going to the bathroom. Gas pains literally left me weak and unable to walk sometimes...covered in cold sweats.

By 22 I had had enough!! They did a laparoscopy and found I had just as you have....adhesions EVERYWHERE like a woven basket my doctor said (it was from the appendix ordeal). Well they cleaned it all up and I have not had that kind of problem since.

You might see if they can "clean" you up too.

I am mostly neuro symptoms, but after going gluten-free, my BM's are down to 2-3 a day from 5-6 and I hardly ever have gas anymore. I will get bloated and gassy if I eat TOO MUCH fruit. So I am limiting the fruit to 2 servings a day. Mostly berries, but I love peaches too. The occasional banana/kiwi/cherries. But like I said...I will bloat up if I overdo the fruit.

[purple]

Could it be that being allergic to gluten caused your endometriosis and all your other symptoms. My 19 yr old daughter had all the signs for endo. We took her to the doc and found out she was allergic to gluten. She has stopped most of the gluten and we are still working on it. Her pms symptoms are practically normal. My friend had endo. about 15 years ago and had to have a hysterectomy. She has had multiple surgeries since. The docs always tell her this and that. She is so messed up inside. I keep telling her to see our doc and see if she is allergic to gluten. Hasn't happened yet.

[Marleigh]

I had appendectomy when I was 13. It had actually burst and I needed exploratory surgery to make sure my organs were all o.k. I also got peritonitis. Anyway....around 18 I started having horrible gas/bloating/pain all of the time. Especially when going to the bathroom. Gas pains literally left me weak and unable to walk sometimes...covered in cold sweats.

By 22 I had had enough!! They did a laparoscopy and found I had just as you have....adhesions EVERYWHERE like a woven basket my doctor said (it was from the appendix ordeal). Well they cleaned it all up and I have not had that kind of problem since.

You might see if they can "clean" you up too.

I am mostly neuro symptoms, but after going gluten-free, my BM's are down to 2-3 a day from 5-6 and I hardly ever have gas anymore. I will get bloated and gassy if I eat TOO MUCH fruit. So I am limiting the fruit to 2 servings a day. Mostly berries, but I love peaches too. The occasional banana/kiwi/cherries. But like I said...I will bloat up if I overdo the fruit.

I should have clarified that they did "clean" up the endo adhesions during my surgery...but learning what I have about endo since then, it never really goes away. And since I opted not to do Lupron or BC pills, I still have one ovary that is probably just producing disease constantly. Thanks for your reply and for sharing your symptoms!

[Marleigh]

Could it be that being allergic to gluten caused your endometriosis and all your other symptoms. My 19 yr old daughter had all the signs for endo. We took her to the doc and found out she was allergic to gluten. She has stopped most of the gluten and we are still working on it. Her pms symptoms are practically normal. My friend had endo. about 15 years ago and had to have a hysterectomy. She has had multiple surgeries since. The docs always tell her this and that. She is so messed up inside. I keep telling her to see our doc and see if she is allergic to gluten. Hasn't happened yet.

This is something I'm seriously considering at this point...that a gluten allergy is causing the endo. I have had GI symptoms for as long as I can remember, so it's possible I've had an allergy my whole life that is triggering other diseases. I have an appointment with my OB/GYN next week; I'm considering eating "normally" until then and demanding celiac testing, then taking it from there. I'm tired of being dismissed and I'm tired of being sick every day.