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Reviewing Celiac In The Family And Need Advice.

Woolygimp

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Woolygimp Contributor
Woolygimp
Posted

Posted a few threads here and there, but this pretty much sums it up. Especially with the latest news that my liver is possibly damaged.

Ran into hypothyroid symptoms about three years ago, which got real bad until they were relieved with T3 therapy vs Wilson's Temperature Syndrome. Have severe anxiety (since being medicated w/ Alaprozam this has relieved some dry skin, dry mouth, dry eyes, and some fatigue), with normal cortisol levels (suspected Pseudo Cushing's), sudden onset of lactose of intolerance, elevated liver enzymes w/ possible cirrhosis (finding out extent of the liver damage next Tuesday), 50 lbs worth of weight gain, and enlarged prostate w/ trace amounts of blood in urine, fatigue, malaise, a red rash ALL over my body [doctor says is folliculitis] and finally IBS.

I'm 20 years old, and up until I was 17 was very healthy. All this has happened in the past 3 years. It's like something took a scrambler to my body, and it's a mess. I work out almost every day, so I'm still in pretty good shape although a lot of this weight just isn't coming off. Went gluten-free for 2 months, IBS symptoms cleared up. Had 2 antibody tests: negative, negative.

Family, and here's the kicker.

Mother - Rheumatoid Arthritis (recession), severe IBS symptoms, and hypothyroidism.

Sister 1 - Rheumatoid Arthritis, Sclerosis, and a few other auto-immune diseases. (34 years old)

Sister 2 - One of the worst cases of Psoriasis the dermatologist has ever seen. (26)

Sister 3 - Hypothyroidism. (29)

Sister - Healthy as of now (17).

Sister 3's daughter - Weight gain, depression, anxiety, and IBS symptoms (6 years old).

Me and my oldest sister have definitely taken the brunt of all of this. We were both perfectly healthy, and then it just kept getting worse, and worse. After explaining Celiac, and letting them read print-outs they suspect the disease may be the cause of a few of the problems so my mother had her blood test (antibodies) as well as the HLA Class II - DQ2/DQ8 gene test to see if she has a possibility of being a carrier.

[eagerly awaiting results...]

My symptoms appeared after one of the more stressful teenage experiences, a breakup.

I've done so much research, and I can't think of ANYTHING else that would cause this range of problems. Absolutely nothing, but Celiac. My liver has me worried now, and I've only noticed a small patch roughly 2inch x 2inch near my right shoulder which is yellow (could be jaundice). I've also got purple striae near my armpits.

At 17 I was 135-140.

1 month later I was 180.

As of 1 week ago (three years later) I was at 195, even with daily exercise.

As of today I'm down to 186, been gluten free since that week. Staying on the diet this time.

------------------------------------------------------------------------------------------------------------------

I'm just wondering what you guys think of this whole mess. If my mom tests negative for the DQ2/DQ8 gene then it rules out Celiac, but if she even has the gene , and is negative for the antibodies, then I'm not prepared to give up without being absolutely certain this isn't what is causing the problems.

Meaning expensive blood tests to go around.

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CarlaB Enthusiast
CarlaB
Posted

Here's another one with almost identical symptoms to celiac. You might look at it.

Open Original Shared Link for symptoms

Open Original Shared Link

www.Lame Advertisement

and Open Original Shared Link for testing.

Don't let the dr.'s laugh it off. Don't get tested anywhere but IGeneX.

Hope you get to the bottom of your health problems very soon.

BTW, the first time I had Lyme symptoms was after a breakup. I was asymptomatic before then. That was back in 1982.

Purple straie can be from a Bartonella coinfection.

super-sally888 Contributor
super-sally888
Posted

Hi,

Regardless of what the blood tests say (not all genes are discovered, so even if the tests are negative doesn't mean that gluten is not a problem), you don't need a drs orders to try out this diet or stick with it if it makes you feel better. And this is a healthy diet! Particularly if you stay with natural rather than processed foods...

The family history could be due to celiac.

Of course, if the tests are positive, then you have your answer and the good thing is that most problems can be prevented by sticking with the diet.

Let us know how you go. Maybe some of your family members will also try out this diet.

Sally

Jestgar Rising Star
Jestgar
Posted

Your liver can fix itself, don't stress over it. The yellow spot could be a healing bruise and the striae could be new stretch marks from the sudden weight gain. (Did your boobs get bigger?)

Nancym Enthusiast
Nancym
Posted

Body builders also get stretch marks.

There's lots and lots of weird autoimmune diseases but pretty much everyone such disease is connected to celiacs so you might be on the right track. Good luck!

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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