Sister with Celiac...I have had symptoms too

corgilover · Joined: 07 Aug 2008 Posts: 13 Location: NW OH

Hello,
I am new to this forum and have already found it to be of interest. I am a nurse, so one would think I that I would recognize if I had a problem with celiac. Well, not so much. In nursing school we were taught that patients presented with diarrhea and were very thin with recent weight loss.

Recently my sister was diagnosed with celiac after having contracted mono this past spring. Her GI dr. told her that she had the disease for some time, but she never had any symptoms until the mono. She never had diarrhea. In fact it was just the opposite for her. She had terrible stomach pain/discomfort and did have some weight loss. In fact, her GI dr. was not even considering celiac during her examination. When her blood work came back she tested positive for all 7 antibodies and had a positive biopsy.

Now, my story and questions. After the birth of my son 16 years ago, I had chronic uncontrollable bloating/gas. I never discussed this with my dr. At that time I truly thought it was all due to having such a tough labor/delivery and that my digestive system was reacting to the difficult birth.

Today, I still have the very same digestive problems, they have never gone away, and I am anemic, fatigued, have some depression/anxiety issues. I have always blamed my anemia on being female, and the rest on hormonal changes. (I am only 39) However, I have had several hormonal test, thyroid too and they always come back negative. So, I have just adapted to my situation. I also have stomach pain (plus bloating gas) after eating gluten foods. Artificial sweeteners are also troublesome for me.

I know that celiac disease is genetic. Now, I am wondering if I too have it. After having had read some of the not so typical celiac symptoms that others of you have had, I feel that I may also be positive.

Dose anyone out there have a family member with celiac too? Do my symptoms suggest the disease? I have not had weight loss. I would love your to hear your thoughts Smile

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Have A Blessed Day!

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Corgi,

Welcome to the board! Hopefully medical school has updated their lesson plans. Classic sx's are not by any means the norm. Atypical sx's are the norm! There are is a huge percentage of dx'ed celiac that do not present with gastro sx's. Sadly, mainstream medicine still looks at only classic sx's.

Unexplained anemia is HUGE red flag. I had a friend call me, her niece was newly dx'ed and she asked me to help her out. As we talked I started explaining it's genetic connection. I told her somewhere in her family, others have - they may not even have any sx's - or they may have something like unexplained anemia. She paused and said "You know Al, I've had UA for years...plus I've had bathroom issue that I don't talk about". Long story short, she took my advice and got tested - sure enough - she has CD too.

I have another friend. Family history of CD. He was/is overweight, and has no sx's. After testing he's a Silent Celiac. Sadly, he's jumped off the GF wagon and is consuming the poison.

Please, get yourself to a doctor and request a complete Celiac Panel. You might be surprised with the findings!!

Many experts feel in order for CD you must have...

1) Genetic make up
2) Gluten
3) trauma to the body: infection, illness, surgery, pregnancy, stress

The trauma sets your body off into overdrive.

Good luck in your knowledge quest! Don't be afraid to ask questions! Looking forward to hearing your progress...
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

corgilover · Joined: 07 Aug 2008 Posts: 13 Location: NW OH

Thanks aklap! I mentioned my sister's recent dx to my dr. and he seemed like he was not concerned at all. I have had a colonoscopy (but that does not view the small intestine) and an endoscopy, but they were "not looking" for celiac. No biopsy was done either. I think I will insist on the celiac panel! Unfortunatly, we all must be our own dr.!!
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aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Here's a couple of threads for you...

Anemia & CD - http://forums.glutenfree.com/topic6937.html
CD sx's - http://forums.glutenfree.com/topic61.html
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Here's some more info: Our Thread on Info aimed at Medical Professionals
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

All first degree relatives of celiacs should be tested regardless of symptoms. Here is some information you may find interesting:

http://celiacdisease.net/assets/pdf/CDCFactSheets%20FactsFigures%20v3.pdf

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

In answer to your question about having relatives with CD, I have several 1st degree relatives and several 2nd degree ones with signs of it too. Two of my daughters put their children on the GF diet without testing because the kids sx's were so strongly positive. The kids have all improved dramatically and one of them who was only 3rd percentile for growth has grown several inches in less than a year. Our family actually seems to have a higher % of celiacs than the statistics would suggest. Apparently both of my parents carry one of the genes which might explain it.

And no, I did not have "textbook" s/s's. My disease mainly manifested itself at the time of dx with skin symptoms from DH. I have known just about all my adult life that I had problems with wheat, but mainly just avoided it, although at no time would I have been classified as GF. I had occasional bouts of GI sx's and have always had a cardiac arrhythmia triggered by gluten. I've also had unexplained anemia in recent years even though I'm post-menopausal and eat plenty of iron rich foods. At my last doctor's visit I was finally in the low/normal range which is an improvement.

Good luck! I hope you get the answers that you need.
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Steph

ostrich · Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska

Adding to the family discussion...

My family (my father's side) has a loooong history of "tummy troubles". I'm not sure if they're CD related or not (nobody's gotten tested), but they certainly exist.
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Fifi · Joined: 01 Feb 2008 Posts: 230 Location: Wauconda, IL

A lot of times the family members havd problems and probably have cd but feel like if they don't know they don't have it so unfortunately they don't get tested as in my family. I am sure in my family there are several members that have it but after seeing what I am going through they don't want to change. They believe in what they don't know won't hurt them. They just don't know how wrong they are..
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GF BD 1/4/2008
Rosanne

isto · Posted: Fri Aug 08, 2008 9:33 am Post subject:

Some of my children have CD and at least one of my sisters. I believe my mother has it, but I doubt she will ever get checked because she thinks its nonsense, from what I understand. I remember many relatives from my childhood who had illnesses that now sound to me like clear symptoms of CD.

I believe my first, late husband carried the gene although he had no symptoms. His family has the classic symptoms as well - especially his grandmother. I have talked to her daughter about having grandma tested, but they don't want to do it because it would change her ability to live in an assisted living facility. Even my former MIL is having problems now with diabetes that i think was brought on by CD. But that is just my opinion - she doesn't see how CD has anything to do with diabetes. Rolling Eyes

I hope you can get some answers for your own health and well-being. There are lots of people on this forum who are quite helpful, supportive, and knowledgable!

corgilover · Joined: 07 Aug 2008 Posts: 13 Location: NW OH

Thank you all for your help! Very Happy

It's scary to think that so many people may never know they have CD and all of the possible health problems they may have or may yet get caused by CD.

Since learning of my sister's dx, I have already spoken with a few people that have this disease. Almost all of them now have other autoimmune disorders directly linked to CD. Crying or Very sad

I am going to insist my sister get her children tested! They are 4 & 6 and are small for their age. My sister's Dr. told her not to worry it and there was no need to test her girls! My Dr. had the same reaction to me. I do not feel most GP's know enough about CD.

After reading about CD on this forum, I will be getting tested as well as my family. Thank you all for posting such great info!
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Have A Blessed Day!