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Can Someone Please Help Me Figure This Out :(

imracin68j

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imracin68j Rookie
imracin68j
Posted

My story.

My mom died of a stomache/intestinal cancer at 53 a few weeks ago. Through her life she battled cronic migranes, cold sores, anxiety, long sleep patterns,histerectomy etc. She never got diagnosed with ciliac.

Growing up, I had some issues with headaches, cold sores and when I got into HS I looked like a 6th grader. I would later grow to 5/11, but not until I was like 18. Over the last few years I've had some issues with my stomach. 3 years ago I had some tests done including upper and lower checks for colon cancer, came back neg. last couple of years I had a case of phnimonia, (swine flu?) a bad set of headaches for like 2 weeks and some stomach issues. I went to my doc and he said its my ibs. I had a ciliac blood pannel done which both came back neg. I was still eating bread at the time.

My daughter has had ussues. She is six. When we first got her onto food she had bouts of diarea. She was skinny but had a little stomach on her. Now she looks normal. She wakes up in the morning with tummy aches sometimes that seem to go away after eating. She has large dark brown stools sometimes and dry ones. No diarea really. She does get dark marks under her eyes sometimes. Other than that she seems like a heathy little girl.

She had a blood test. iga + and igg -. Her doc wants to do another blood test but says this happens sometimes and the child doesnt have ciliac.

My questions:

1: Can my daughter have Ciliac without me having it?

2: Are my blood tests false negatives?

3: Can me or my daughter live a full life if we change our diets to a strict gluten free diet. Thanks.

Billy, scared dad, 37 years old.

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ENF Enthusiast
ENF
Posted

To answer your questions, yes a child can have celiac even though neither parent has it - but it has to be passed down genetically from at least one parent. About 30% of the population has one or both of the main "celiac" genes, but only a small percentage of those with the genes develop celiac. There are other genetics involved, as well as diet, and sometimes a traumatic event can set it off.

A positive blood test is usually a very reliable indicator that celiac is present, but false negatives are common so the condition can't be ruled out through this method of testing.

I don't see why your daughter can't live a full life, it's only a matter of eating what nature intended her to have. It's a hassle to get used to - but it beats the alternative of getting sick.

imracin68j Rookie
imracin68j
Posted
  • Author
To answer your questions, yes a child can have celiac even though neither parent has it - but it has to be passed down genetically from at least one parent. About 30% of the population has one or both of the main "celiac" genes, but only a small percentage of those with the genes develop celiac. There are other genetics involved, as well as diet, and sometimes a traumatic event can set it off.

A positive blood test is usually a very reliable indicator that celiac is present, but false negatives are common so the condition can't be ruled out through this method of testing.

I don't see why your daughter can't live a full life, it's only a matter of eating what nature intended her to have. It's a hassle to get used to - but it beats the alternative of getting sick.

1: If my daughter comes back positive should I assume I had false negatives? And If I do can I still live a full life with a diet change?

2: When you say sets it off.. what does that mean? Sets off the symptoms or sets off the destruction of the intestin? Or does that mean your

ENF Enthusiast
ENF
Posted

If your daughter comes back positive, it does not mean that you have Celiac with false negatives, or even the genetics - she could have gotten it from her mother. I have a Celiac gene from each of my parents. As far as a "full life", we're all in the same boat - you'll just have to be gluten free so that you don't get sick. There are currently about 39 research projects to develop and test medicines to prevent cross-contamination and food poisoning from gluten, so it's only a matter of time until it gets a easier to live with it. To me, it's more of an inconvenience than a great loss. I feel so much better after decades of various problems due to gluten consumption, that the diagnosis was about the best thing that ever happened to me. I don't eat out much, and have gotten considerably healthier due to this - celiac notwithstanding.

By "set it off", I meant the start of symptoms and/or villi damage. Sometimes women who have given birth develop Celiac afterwards, other people have had it hit them after another traumatic event in their lives. Since some people have it since infancy, it can no doubt just present itself without a catalyst.

psawyer Proficient
psawyer
Posted

Welcome to the board!

Many people carry the genes without ever developing celiac disease. There are numerous examples of identical twins where only one twin has celiac disease.

A trigger is necessary to activate the disease. The trigger is something that puts the body, and especially the immune system, under stress. Commonly reported triggers include infectious disease (mono, flu), childbirth, surgery, and significant emotional events such as divorce or job loss. You may have the genes without the disease having been triggered.

If celiac disease is treated with the adherence to a gluten-free diet, life expectancy is no different than for a non-celiac. A person with celiac disease who eats gluten can be expected to live ten years less.

ang1e0251 Contributor
ang1e0251
Posted

I feel I live a very full life with celiac disease. I eat out with friends, run my own business, entertain guests, attend church functions, weddings, shopping trips, go to the movies and on vacation. In short, I participate in everything I did before I was dx'd. I don't let wheat rule my life, it's only food. I enjoy better health than I have in 20 years and I can see my overall health is much better than many of the other 50 year olds I see around me.

imracin68j Rookie
imracin68j
Posted
  • Author

Well, I've decided to make this a positive event. I will make sure everyone I know is aware of Celiac disease. The idea that it isn't screened in the US for all kids is insane. The reason why is obvious, the drug companies would lose billions of dollars. My mom racked up over a million dollars in her short cancer bout. I will be advertising a Celiac awareness on my racecar next year. I've alreads posted a topic on a racing thread I frequent. None of these people have even heard of Celiac but seemed very glad I shared it with them. I also work at a newspaper and will be writing a story on it soon.

Here's my story and my post on the racing board:

This is a long read, but it may help someone here.

Frustration:

My moms passing at 53 was obviously hard on us but to me it left me more frustrated. Everyone was confused with how her disease came on so fast and her doctors really never could come to grips on what kind of cancer she had, which ended up being a stomach/intestinal cancer. My mom's life was normal for the most part, she was a very motivated, self reliant individual. However, there were medical things in her past that were not so normal. She often had serious migranes, she was very thin most of her life, she would have long sleep bouts, especially after a night of drinking in her hey-day after the races. She would also have an occasional fever blister and she had a historectomy at the age of 45. I always attributed this to her off and on smoking, even after her cancer diagnosis.

Growing up:

I was a typical kid. I played baseball, soccer, rode BMX and skated. Later I got into wakeboarding and fell into my longtime family pastime of autoracing. Through all this I had some wierd issues in my life that I never really understood. Going into HS, I looked like a 6th grader. I often got headaches and felt like I had low blood sugar at times. I would also find my self out of it. School work was a challenge as I felt like I had to work 4 times harder than everyone just to understand the basics. Later in my life, things panned out but I would still have this feeling of being out of it at times and would get serious stomach issues from time to time. My blood pressure was up and I started getting heart palputations and chest pains. Over the last few years I started working out and avoiding fast food. I stopped drinking coke and moved to drinking water "most of the time." While this might have helped, it didn't fix my issues. I was eating Subway everyday, skipping the mayo on everything I was eating. At work, there were times my co-workers would be talking to me later in my shift and I just couldn't focus on everything they were telling me. I chalked it up to just being tired. My doctor said its nothing more than IBS so I just delt with it. There are countless times I can remember getting into my race car a complete zombie. I'm thankful I never hurt anyone including myself. How I finished some of those nights is beyond me. Often times peope would tell me I looked tired or even on drugs. I just thought they were seeing things and I attributed most of it to CO2 poisoning. Over the last year, I got a serious bout of Phenomonia, which I made worse but not taking time off from work or racing. I ended up in the ER with what I thought was food poisoning and had a round of pretty bad headaches. My doc said, your stressed about your moms deal and have IBS. (Irritated Bowel Syndrome)

Sunnie:

When we had Sunnie, she was healthy but had a few red flags that were just.. well wierd. She was very skinny, my mom always accused us of not feeding her. She had this bot belly which we thought nothing of. She had cronic diarea when we first got her onto food. Under her eyes she looked anemic at times. She would often times wake up in the morning of a stomach ache. We would usually tell her it was just because she hadn't eaten breakfast. After breakfast she would usually start to feel better. Her attention span reminded me of me when I was a kid. Short. Aside from all that she was/is a perfect little 6 year old. Very kind to people, very thoughtful and her teachers love her. And of course, she loves racing.

Research:

After doing a few weeks of research, I came across something that started to put all the pieces together. Celiac disease. This is a common disease in the US. Up to 1/100 people have it. The scary thing is out of all those people that do have it only 3% of people know they have it. Left untreated these people pick up things like, cancers, high blood pressure, diabetees, arthritis, heart disease, bone degeneration and the list goes on and on. Usually, these people never really understand why they get these diseases other than they just do.

What is Celiac disease?:

Celiac disease is where your immune system attack your intestins when you eat gluten. Gluten is found in everything from breads, cookies, beer, and just about everything else you can imagine. Your intestins make up around 75% of your immune system. Over time your intestins become unable to absorb nutrients and vitamins which cause defiencies which lead to more sever complications. Many people have no symptoms of the disease until later in life.

Why isn't this screened?:

In Europe all children are screened at the age of 6. In the US no kids are screened. It's one of the most undiagnosed diseases in the states. I litterally had to ask for it both for Sunnie and myself. My moms doctors, which included one UCLA's best never even thought of the idea she could have Celiac until after her death when I mentioned it to them. The disease is genetic, meaning if your parrents had it there is a strong possibility that you may have it. The main reason it isn't screened in the US is because the drug manifactures rule the medical establishement here. The fix for Celiac disease isn't a pill. It's a strict adhearance to avoiding gluten. Good news is, once someone fixes their diet, the symptoms and disease starts to correct itself. Caught at an early age obviously has the best outcome. The intestins have the ability to repair themselves between 6 months to a couple years depending on how long the damage has happened with a strict adhearance to this dietary change. In the U.S. most Celiac cases (which are rarely caught) are diagnosed between the ages of 40-60 years of age. The average time that it takes for someone to realize their Celiac disease is roughly 10 years.

Sad and happy:

We just had Sunnie tested and her test came back positive for Celiac. In some ways I was sad but mostly happy that we may have saved her life and given her the chance to live a normal childhood. As far as my mom, I wish I would have known more about this disease a few years ago. I may have saved her life. I still have dreams/nightmares that I'm back in time informing her on Celiac disease. IMO, I think every child should be screened for this as well as every American. The amount of money my mom racked up in her short bout probably went over the million mark. This could have been avoided to some degree with propper screening.

Anyway, I know this was long winded and there are probably a select few that will read the whole message but if it saves someones life then it was time well spent.

Cheers, Billy.

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mommida Enthusiast
mommida
Posted

Billy,

I first want to express my sympathies for your loss. It is very hard to lose your mother, (Your biggest fan in life.) May your memories ease your grief.

Sounds like Sunnie is one lucky kid! She is diagnosed and well on her way to a healthy gluten free life.

Please try the gluten free diet yourself. If it makes you feel better, you have positive scientific proof you have a problem with gluten. Some people with diagnosed IBS feel better and have less symptoms on a gluten free diet. Genetic testing is not always accurate. (My family experience is proof of that!)

Welcome to the board!

Laura

imracin68j Rookie
imracin68j
Posted
  • Author

Well, I started the ball rolling in my town. A doctor has chimed in claiming all doctors need to be educated on this. See the blog and replies here:

Open Original Shared Link

One question directly.

My daughters tests were IGg- and IAg+ (Strong) 1.8 with a high being .9

My tests (which included 5 panel tests according to my doc) came back neg.

I believe with my moms passing and my issues that I gave celiac disease to my daughter. But my tests are neg. Does that mean that I have celiac disease? or I'm carrying the gene? Can you carry the gene and still get the symptoms of celiac disease but not have celiac disease? It's all so confusing. Should I do more testing on myself?

ravenwoodglass Mentor
ravenwoodglass
Posted
Well, I started the ball rolling in my town. A doctor has chimed in claiming all doctors need to be educated on this. See the blog and replies here:

Open Original Shared Link

One question directly.

My daughters tests were IGg- and IAg+ (Strong) 1.8 with a high being .9

My tests (which included 5 panel tests according to my doc) came back neg.

I believe with my moms passing and my issues that I gave celiac disease to my daughter. But my tests are neg. Does that mean that I have celiac disease? or I'm carrying the gene? Can you carry the gene and still get the symptoms of celiac disease but not have celiac disease? It's all so confusing. Should I do more testing on myself?

If you are having symptoms then you could go to a GI and ask for a biopsy, but those have false neatives also. You also could go with Enterolab, they do stool testing for antibodies but do not technically diagnose celiac. Or you could go gluten free with your DD and let your body give you the answer. Sometimes that is the best and most conclusive way for the 20% of us who give a false negative in blood work. Did you actually see the results of the blood tests on yourself? Sometimes a doctor will call a low positive a negative. It is not a positive , even one point is a positive.

imracin68j Rookie
imracin68j
Posted
  • Author

SO an update...

daughters igg neg, iga pos (strong)

doc sent for more further celiac blood test and all were normal.

What does this mean?

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