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5 Women, All Family, Same Illness?


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6 replies to this topic

#1 Caedia

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Posted 27 June 2005 - 06:16 PM

Hi,

I wanted to write here to get some opinions on something that has been going on health wise for my family for a long period of time. My mother, sister, aunt (mother's sister), and her daughter (my cousin), as well as myself have had many health problems and the same symptoms of ill health (or mostly the same) for quite a while now. Mind you it was only recently we all started talking about this and realized something wasn't right. A few of us have had tests, but none have been tested for celiac disease.

Like I have mentioned most of our symptoms are the same and when I found alot of these symtoms listed at a celiac information site a while back, it has made me wonder if this could be our answer to on-going health problems? Abdominal cramping/bloating, Abdominal distention, diarreha or constipation, chronically dehydrated, lack of energy, excessive gas problems, mouth sores, dry skin (or just extreamly sensitive skin), depression and inability to concentrate.. are some of the symptoms we all share. In my case I have also developed what is probably Amenorrhea (loss of period - a few months now and no chance of pregnancy), weight loss (atleast 15 lbs in a short period of time for no reason - this was AFTER the period loss not before), and have had tooth enamel defects since I was a child. I also read something about people with celiac disease having back pain ... and this is something a few of us had dealt with (lower back pain, as well I seem tto have a odd curve to my lower back which makes my belly stick out in a odd and embarrassing way).
There are a few problems as to why I haven't just out and asked my doctor to test me for celiac disease. 1. because I (and my family that have the same symtoms) have a history of depression, the doctors tend to act as though you are automatically crazy and being a hypochrondriac if you come to them with any medical information (like you're looking to have a disease if that makes sense). Its a terrible discrimination, yes, and no Im not crazy, I'm just depressed. Asides from this, I could go to another doctor but when I was diagnosed with a wheat allergy, I also took out gluten (or the majority of obvious sources - I'm pretty sure I'm ingesting some) because I couldn't handle the severity of the symtoms any longer, and not getting any answers from my doctor. I've heard this makes the blood test not show positive even if you are bcause you're not being exposed to gluten?

Since I have taken gluten out of my diet, my stomach isnt' always distended, my stool doesn't float, my skin has cleared up, and many more benefits. IT's just occasionally I think I ingest a small amount of gluten in products and then I get severe symtoms from this. Only this past sunday I ate something that gave me severe stomach distention, but this product had no label so I dont know if it had gluten or not.

What should I and my family do? go to another doctor because of the discrimination? Should I start eating gluten again because of the blood test problems? What do you think the chances are that so many of us could have celiac disease?

Last but not least some of have some symptoms that I didnt ind listed anywhere... , nausea and feeling "too full", and itchy ears (the have dry peely skin in them, I've heard allergies can cause this?), weight gain in the stomach area only, and itchy rear-end (yes I mean anus :S ) ... seems like a personal question but has anyone of thier loved one with celiac disease had these problems?

I just want to feel completely healthy again, and if it means this is our answer, atleast we can find a solution and move on with our lives. I'm sick and tired, of feeling sick and tired.
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#2 ianm

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Posted 27 June 2005 - 06:35 PM

I pretty much had all of the symptoms you have described. Well all except the "female problems" because that's not biologically possible. :lol: I am convinced my dad and brother are also gluten intolerant. I went to dozens of doctors and got dozens of prescriptions and not one of them ever suggested a food intolerance. That was something I had to figuire out for myself. I discovered I was gluten intolerant after trying a lo-carb diet which put me on the right path. If I had known there were tests for this I would have had them. I have been gluten-free long enough to turn my life around and don't think it would be worth the trouble. A gluten-free diet is all you can really do anyway but any further testing is your decision. There are quite a few self diagnosed people here.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#3 KaitiUSA

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Posted 28 June 2005 - 04:33 AM

I had symptoms such as nausea, anxiety, constipation, weight loss, etc.
You and everyone in your family should be tested. You should be on gluten for a good 3 months before testing though because you may have inaccurate results. It is a genetic disease so maybe all of you do have it. Even if you don't it's worth being tested for. You should get a full celiac panel which consists of the following tests:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

Good luck :D
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#4 mommida

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Posted 28 June 2005 - 08:32 AM

If you feel a gluten challenge is too extreme for your health, you could try genetic testing. You can order the test over the internet yourself, and skip the doctor's office. You have mentioned you feel better on a gluten free diet and that is one of the most important things to consider. The accuracy of the tests, in my opinion are not accurate enough. It is taking on average of 11 years in the U.S. for diagnoses and I have read an article on the lab's accuracy (most recently posted by Michelle/Bean) showing how so many diagnoses are missed.
Best of Luck!
Laura
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#5 watkinson

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Posted 28 June 2005 - 10:24 AM

caedia,
I'm so sorry that you are so sick, but reading what you wrote was such a read light for me. It sounds like you all have classic celiacs. My grandmother, my aunt, my mother, my sister, myself, and my daughter all have it. At least I think they do. My grandmother has passed away so she couln't be tested but she suffered from stomache problems and ill health her whole life. Celiac disease can show a miriad of symptoms, and somtimes none at all. You all definately need to be tested, but like Katie said you need to be on a regular diet containing gluten for the antibodies to be present. Make sure your doctor sends you to an endocrinologist and make sure that doctor gets you the correct tests. Maybe print out what Katie said and bring it to the appointment.

Ive had lower back pain and other bone pain since I was in Jr. High. I recently found out that it is called osteomalacia. Because a celiacs intestines are damaged we can't absorb nutrients. When we are young and our bones and teeth are forming we need calcium, but the intestine doesn't absorb it so our bones and teeth don't form completely resulting in enamel deffects, bone malformation, bone pain, even small almost undetectible bone fracters.

Once you go completley gluten-free you wil probably notice that you are even more sensitive to gluten. Even a drop can cause a reation. Read the lists on this site for safe and forbidden foods, that should help you alot.


hope your better soon,

Wendy
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#6 watkinson

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Posted 28 June 2005 - 10:30 AM

caedia,

One more thing...depression is also a sign of celiacs. Lots of nuerological problems like sleeplessness, and nerve damage, can be symptoms of celiacs. interestingly enough, conditions like bipolar disorder, autism, spychtsophrenia (sp) and HDAD can be improved by going off gluten

Wendy
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#7 Caedia

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Posted 30 June 2005 - 10:06 AM

Thank-you everyone for taking the time to respond to my post.

I think what I will do after reading all this is see a new doctor. My mother has one who she recently started seeing and has been investigating the stomach problems for her. Apparantly she is very good about doing the tests and not just passing her her off like a nutcase. She just hasn't tested for celiac.

I'm thinking about who else in my family may be affected by this, and I can remember when my grandfather was still here, he was always saying he had stomach problems. He finally passed away due to abdominal tumors. where in his abdomen they were I am unsure. Can untreated (no diet restriction, etc), in celiacs cause such things to happen? (I wonder if any studies have been done on this).

Laura - I think putting gluten back in my diet would be too challenging on my system. But perhaps what the doctor can do is test the rest of my family and see if anything turns up. That doesn't give me a definate answer but after this I can always assume that maybe I can get the genetic testing.

Wendy - I used to get the sharp bone pain as well alot, not as much anymore though. I've had over 2 dozen fractures (no kidding), and from as far back as I can recall, my dentist has said that since I was little my teeth were not well formed. We always thought this was due to me not getting enough calcium because I have an allergy to dairy. I'll be sure to mention this when I get to a doctor.

ianm - I think that I could indeed continue on gluten free, but I think the tests might be useful just to rules things out. Right now I am already restricted on many other foods, so more restrictions are hard to deal with. I just want to make sure its the gluten causing this instead of something else... but again, I do feel a tiny bit better taking what I have out.

Kaiti - I'll write down what you said and ask about it... thanks for that information!


I'm going to keep on this and see if I can get some answers... I really appreciate everyone help.
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