Waiting For Blood Test Results--here Are My Symptoms

[samcarter]

I am 35, mom to three. Here are some of the symptoms I've had, from childhood on:

As a kid, always weepy, "over-sensitive" according to my family, distended lower abdomen (was told "all the women in our family have that" by my mom). Lots of cravings for carbs, stomach pains and throwing up as a kid.

Was tested for an ulcer at age 9 due to stomach problems. Frequently constipated.

Severe appendicitis at age 16--misdiagnosed for a week because they "couldn't find" the appendix--later the surgeon said it had slipped behind the colon, and it was so infected that it burst as soon as they got it out.

Still had random stomach pains throughout high school and college, also severe headaches. Gassy (whole family was gassy, come to think of it, especially my brother).

Bulimic in high school and college. Recently I have read that celiac can trigger or be triggered by eating disorders, is that true?

I have always bruised very easily. I find bruises on my legs that I don't remember getting.

Cut out dairy in my mid-20s, thinking it would help headaches and acne. It did, to some extent. I was already vegetarian (age 14) so was eating a lot of bread and pasta.

During all my pregnancies, had Immune Thrombocytopenic Purpura (body destroying own platelets). Never tested for anemia.

Low blood pressure--even when pregnant.

Had one anaphylactic episode at age 28; ended up in ER. Had just eaten breaded seafood, but further allergy tests just listed me as highly allergic to mold, dust and cats (also slightly reactive to apples, bananas and green beans). Doctor said my untreated allergies just pushed my body over the edge.

Recently just feeling like total crud, sleepy and depressed (battled depression whole life, as well--at one point had psychotic episode and was put on medication). Started noticing a pattern--very sleepy and tired, bloated after eating pizza or bread. Started reading up on wheat and wheat intolerance. Realized I was swinging between diarrhea and constipation, never felt rested when waking up in the morning, and the depression kept coming back.

Family history: Maternal grandmother died of colon cancer. Mother always had dark circles under eyes (which I have as well). Mom had a lot of irregularity, mood swings (severe), depression (wouldn't admit it). Psoriasis runs in the family (mother, father, me).

Brother died suddenly at age 30, no cause of death found on autopsy. He often battled respiratory viruses and infections, seemed to always catch something and be run down. Both he and I had asthma.

Luckily, my GP is a very easygoing doctor and was willing to run a blood test for celiac. He said he would test the "Endomysial IgA), since that was the most sensitive and reliable. He also drew for an anemia check and something else I can't remember (bad, I know). They said they'd get the tests back in a few days, but I'm not holding my breath.

In the meantime, with the support of my husband, I'm going gluten free. This will be hard, because I have a household to bake for (we bake our own bread) and I have three kids to feed. If I do come back positive for celiac, we will probably end up having the kids tested. I suspect my husband's brother has celiac--he has had stomach problems his whole life and depression runs in the family as well. My husband's niece (according to my sister in law) gets a rash when she eats wheat, so their whole family is wheat-free. At least I'll be able to ask her for tips.

It sounds crazy, but both my husband and I are hoping the test comes back positive. Already, though, I feel so much better after two days mostly gluten free. (Accidentally ate a pizza with wheat in it--thought it was a cornmeal crust.) I haven't had hardly any gas, I am significantly less bloated and distended at the end of the day, and I haven't had a headache yet. I was much less sleepy after dinner last night. But people are weird if you just tell them you don't want to eat wheat--if you tell them you are allergic or have a disease, they're less likely to brush you off as a kook.

Do I sound like a hypochondriac?

[samcarter]

Forgot to add my mother has fairly severe Rheumatoid Arthritis in her hands and feet (onset in her 40s). Her grandfather had RA throughout his whole body.

[gfpaperdoll]

OMG, Thank you for posting your family's history. My mother also died of colon cancer. It seems to be common among the celiac group. Of course my mother was not dx, we did not know anything about celiac then. She did develop severe food allergies that put her in the ER more than once.

What a family history, it sounds like you all have a problem. Do you mind if I ask you what nationality? wouldn't happen to be Irish by any chance?

Also, as with my son & his wife, I have a small curious interest in the fact that people with the Irish celiac genes seem to marry others that have the same genes. I find it totally fascinating that not all things are as "by chance" as we like to think.

yes, I foresee a huge change in lifestyle for the better for your family. Please hang around here & keep us posted on how many get tested etc. & how you do on your gluten-free journey. I have been gluten-free for 4 years now (wheat light for 10 years before that) & contine to feel better, although I keep thinking that I cannot get any healthier!!! This could be huge for your family & prevent you getting colon cancer among other things.

You might want to read "Dangerous Grains" & "Celiac Disease the Hidden Epidemic" another good read, though not a Celiac book, is "Good Calories bad Calories" by Gary Taubes, it is not about what you would think from reading the title. It is very well written & I think everyone should read it.

welcome to our group!!!

[samcarter]

OMG, Thank you for posting your family's history. My mother also died of colon cancer. It seems to be common among the celiac group. Of course my mother was not dx, we did not know anything about celiac then. She did develop severe food allergies that put her in the ER more than once.

What a family history, it sounds like you all have a problem. Do you mind if I ask you what nationality? wouldn't happen to be Irish by any chance?

Also, as with my son & his wife, I have a small curious interest in the fact that people with the Irish celiac genes seem to marry others that have the same genes. I find it totally fascinating that not all things are as "by chance" as we like to think.

yes, I foresee a huge change in lifestyle for the better for your family. Please hang around here & keep us posted on how many get tested etc. & how you do on your gluten-free journey. I have been gluten-free for 4 years now (wheat light for 10 years before that) & contine to feel better, although I keep thinking that I cannot get any healthier!!! This could be huge for your family & prevent you getting colon cancer among other things.

You might want to read "Dangerous Grains" & "Celiac Disease the Hidden Epidemic" another good read, though not a Celiac book, is "Good Calories bad Calories" by Gary Taubes, it is not about what you would think from reading the title. It is very well written & I think everyone should read it.

welcome to our group!!!

My husband's paternal grandmother was 100% Irish. My father in law has had lactose intolerance and depression all his life (hmm). Now, on my mother in law's side, it's mostly Mexican and Spanish. There's some Cherokee thrown in there, too.

My heritage is more Heinz 57. My father is 1/2 German, 1/4 Hungarian, 1/4 Irish (his grandmother was 100% Irish). My mother has never made it clear what her father's heritage was, but I know there is some French on her mother's side. No idea about Irish. So as far as I know, i'm probably 1/8th Irish.

I had read about cancers being associated with celiac disease, but colon cancer per se isn't mentioned--mostly the articles say something about lymphomas of the intestine.

I forgot to mention that my brother also struggled with depression near the end of his life, too. He mentioned having panic attacks and being really down, but we attributed that to his high-stress job (attorney) and family issues.

Thanks for the welcome. I have read the Celiac Disease book by Peter Green (well, at the bookstore). Once I get my blood results i'll probably buy it. My husband thinks that even without a positive blood result, I probably have it--given all my symptoms.

[gfpaperdoll]

Panic Attacks, Anxiety & depression are common neurological symptoms of gluten. Meds are no help - drugged to the gills you will still have depression... I have a friend (Irish) & that is one of her worse symptoms, well the diarrhea, & weight loss also, she is fairly classic in symptoms. But the neurological for her is like a faucet, one wheaty thing & she is done, she also gets the feeling that she cannot breathe. I think that is more common with a wheat allergy. She probably has a wheat allergy & an intolerance. She is 83 & has had the classic symptoms for 3 years.

I have just been involved with her since June, when she called me, I had not seen her in 11 years. At one time she took scrapbooking classes from me. I cleaned out her kitchen & stocked her freezer with homemade gluten free foods & educated her neighbors & friends. They were all standing around with bug eyes, because they could not believe the total transformation in her, after three years of illness. The lady that came to take her blood pressure 3 times a week, could not believe it either, her blood pressure went to normal. She was doing her own cooking, cleaning the house, doing her laundry & walking around her house without her walker. It was all I could do to keep her from washing the car, in 100 degree weather!!! One friend ask me one day "what is is about her food that is making her so healthy?" I said she is not eating wheat. I do not think the lady believed me!!!

Then her 60 year old clueless (the nicest description I can muster up) son talked her into eating wheat again. His remarks "you are 83 years old you ought to be able to eat anything that you want to". Well she ended up in the hospital, then his girlfriend dropped her off at a nursing home, with no clothes or personal items. I am not a family member so I am trying to do what I can to get them to diagnosis her so that they can change her diet. In the meantime the aides that get the picture with the son, is helping her avoid wheat.

The sad part is now that she is getting off the wheat & "coming around" again she realizes what a fix she is in... & it is breaking her heart that her son is doing this to her, all for some money & assets that she has...

Of course I had given him all the references for books, web sites & links to check it out for himself...

a lot of other people have problems with celiac but it must be something like 95% of the Irish that have a problem, just my opinion, no stats. Everytime I see a child with red hair, my insides just hurt for the things that child will probably suffer in their lifetime...

After hanging around on these boards for 4 years, you begin to see a pattern of things that are not in the books. Colon cancer is one of the things that some of us "know" is linked to celiac, but there again there are no studies, published papers, etc. My sister that should be gluten-free but is not, gets a colonoscopy every other year, her son, (only child) a young promising doctor died in an accident 2 years ago, & she is a retired x-ray supervisor at a local hospital. So she thinks she knows how to prevent colon cancer. Sometimes having access to the medical profession is worse than just going by your common sense. Somehow, the medical people lose sight of common sense along the way...

yes, after you do whatever testing you are going to do, no matter what the results, please do a serious gluten free diet for at least three months. I imagine that you will never look back.

[samcarter]

After hanging around on these boards for 4 years, you begin to see a pattern of things that are not in the books. Colon cancer is one of the things that some of us "know" is linked to celiac, but there again there are no studies, published papers, etc. My sister that should be gluten-free but is not, gets a colonoscopy every other year, her son, (only child) a young promising doctor died in an accident 2 years ago, & she is a retired x-ray supervisor at a local hospital. So she thinks she knows how to prevent colon cancer. Sometimes having access to the medical profession is worse than just going by your common sense. Somehow, the medical people lose sight of common sense along the way...

yes, after you do whatever testing you are going to do, no matter what the results, please do a serious gluten free diet for at least three months. I imagine that you will never look back.

That is so sad that your friend's son did that to her. At 83, she should be able to enjoy health and vitality! And yes, sometimes just having access to the medical world is detrimental. My dad was a monthly volunteer at the ER, and for some reason my mom thought that endowed him with mysterious medical knowledge--to the extent that she took his advice when he said I didn't need stitches on a huge gash in my leg. (A clue--yes, stitches would have been helpful.)

I'm only on my second day eating no gluten and already feeling better. I'm able to get out of bed without feeling completely hammered and hungover (as though I could sleep forever). I even woke up before my alarm today and yesterday! And I've been, ahem, regular. No constipation or diarrhea so far. Before I was alternating between the two. I'm no longer feeling like I've been drugged after dinner, I actually have energy. Doesn't mean I'm any less lazy but at least I have no excuse! Went for a long walk last night with my husband and kids and felt great afterwards.