Young Adult Daughter's Health Problems

[Guest Kathy Ann]

I was only recently diagnosed and haven't been able to get any of my grown children to test yet. They just don't realize how serious this is.

One of my daughters has many health issues. She has PCOS and is obese. She has become prediabetic and her skin is tight due to edema.

She was completely normal in every way up to about 11 years old. Then she started to gain weight and went straight up. Nothing helped. She has never been an overeater and has had to endure all the wellmeaning suggestions doctors and friends give about "just eating less." She exercised faithfully one time for months at a gym with a trainer and never lost a pound.

It's obvious to me that something is wrong. I almost hope it is celiac. At least it would be an answer.

[CarlaB]

Kathy Ann, this is a celiac board, but I suffer from two conditions and hers actually sounds like my "other" condition -- adrenal fatigue or adrenal burnout.

She also could suffer from celiac, but it's the hormonal imbalance with the facial hair that leads me to believe it's more likely something to do with the adrenals. Also, the pre-diabetic, weight gain, loss of appetite, edema, and irregular periods (which are likely due to her weight as estrogen is fat soluble).

I'm no doctor, but I'd suggest googling this and seeing what you think. I just read a book called Tired of Being Tired by Jesse Lynn Hanley, M.D. that is very good on this subject and I'd highly recommend it. I also had the hair analysis Dr. Hanley recommends done and it told me a lot about how my body is operating.

As you know, your children should all be tested for celiac since you carry the genes, but if they're adults, there's not much you can do. Gluten intolerance is actually what contributed significantly to my own adrenal fatigue, so often our health problems are all inter-related.

[Guest Kathy Ann]

It's always hard to determine which came first....the cart or the horse. After studying celiac and the genetic aspects of it all, I believe that celiac causes an overall imbalance/stress in the body that can usher in many other things. Celiac is unique, of course, but similar things could probably be said for other genetic protein intolerances like dairy, eggs and soy that you can be born with and have delayed reactions from. It just seems logical to me. Of course, once the damage is done, we have to deal with that. Avoidance of gluten will stop the continual damage and plug the leak, but a strong body is still needed to clean up the mess afterwards. That's where medicines, supplements and superior nutrition can come in.

You are probably right on in suggesting adrenal issues for my daughter as well. That's a great book, by the way. But something has to cause those adrenals to react in such a way. I think a body on constant "red alert" because of continual poisoning (gluten) just HAS to be in for a lot of collateral damage. PCOS fits into the autoimmune category, which fits right into the aftermath of celiac damage.

How many diseases in our country, do you suppose, have their basis in undiagnosed celiac? If gluten intolerance is as widespread as researchers are saying it is, the mere avoidance of gluten could be compared to something like penicillin in its ability to radically change the health and survival of the general public as we know it.

[AndreaB]

Kathy Ann,

It could be gluten that is contributing to the problem. If she is only eating one meal a day, that is contributing a lot! Her body is going into starvation mode and will not let go of those pounds.

Would she just consider the basic test with enterolab for $99. That is just the gluten sensitivity test.

Has she had any testing done for anything?

The irregular menstrual cycle could be gluten, could be soy if she eats soy. I would encourage her to get tested. Could she ask her doctor to run a celiac blood panel? Do you have a celiac gene or 2 gluten sensitive genes, I'm sorry I forgot....I'll check your sig.

She definately needs to do something starting with eating at least two meals a day if she can get her nutrition that way. If she doesn't want an official diagnosis and is willing to try the gluten-free diet, that would be great. I know, kids can be very stubborn. My husband has 2 celiac genes and has warned his boys from a previous marriage about it.

[CarlaB]

Also, when the adrenals have been stressed, it can cause autoimmune disease, yet gluten intolerance can cause the constant inflammation to stress the adrenals. Guess we can't know which comes first! In my case, we've had a very stressful 6 years, I've been ill, plus I exercised strenuously through my illness. I think this is what drained my adrenals and caused them to act this way.

My doc has me eating several small meals a day focusing on protein and veggies, getting enough rest, etc. All this would help anyone get better. It's amazing how everything is inter-related! For me, and for many, "just" gluten-free isn't enough, the body seems to need an extra kick to heal, then falling into a gluten-free lifestyle for life keeps it healthy.

[Guest Kathy Ann]

We are sure aware of the starvation mode problem. But in the beginning, when the weight first started to build, she was eating normally, several times a day. Starvation mode may be driving it now, but I don't think it was the initial cause in her case.

[AndreaB]

Is she willing at all to consider testing for this? I know you've mentioned the kids aren't really interested in looking into it. Does this include her? She really needs to start looking at everything, and celiac is part of that.

[Guest Kathy Ann]

Yes, I think she is willing.

I was all set for her to do a tTG blood test through our local hospital, who will do it for a mere $20. But when I asked Enterolab their opinion, they said that the $99 stool test would be a lot more accurate. They said that IF the blood test was negative, it would backfire on me and give my daughter the impression that she didn't have to go gluten free. The stool test would pick up the gluten intolerance even if it wasn't very active yet, which is where they like to catch it.

I'm rather partial to the stool test too. I have a lot more confidence in it.

[AndreaB]

I hear you about the cost. I've put everything on credit card, even though I don't like to do that. I wanted answers, we'll be able to pay it off in the next year, barring any other unplanned things. I still have to test my youngest but he's only 10 months.

[carynanne]

This disease is admittedly fascinating to me in its interesting mysteries, varying manifestations and potential ramifications. How many diseases in our country, do you suppose, have their basis in undiagnosed celiac? If gluten intolerance is as widespread as researchers are saying it is, the mere avoidance of gluten could be compared to something like penicillin in its ability to radically change the health and survival of the general public as we know it. This could be big.

My sentiments exactly!!! The more I read about it, the more I think undiagnosed celiac disease is everywhere!! I was reading a story about an autistic boy in Reader's Digest, that described how a gluten-free diet had helped him to some degree, and had also helped many other autistic children virtually overcome autism. We wonder why children nowadays have a 1 in 133 chance of developing autism: could it be a combination of genetic predisposition and gluten intolerance? If everyone in America went on a gluten-free diet, could we save untold dollars on healthcare? And why aren't more doctors aware of this?

I've been getting on my sister's nerves bugging her to get tested. She has a seizure disorder that no one can classify, that started when she went to college 8 years ago and has gotten worse. I have been diagnosed with PCOS but have never had seizures. My mother has GERD and intestinal issues, and I even wonder if her breast cancer 13 years ago had something to do with celiac. It's insane the number of issues that are connected to wheat. Why did our ancestors eat it to begin with? Is it really like a poisonous plant that people have been toxifying themselves with for thousands of years? Food for thought...

Caryn

[Nancym]

Your daughter sounds hypothyroid. Which might also be related to Celiac, since a lot of people with autoimmune thyroid conditions also have gluten intolerance.

But the hair loss, weight gain, menstrual irregularities are classic symptoms. Look it up on the Internet and see if that doesn't match her symptoms.

You might want to find out what her TSH number is. The range is unacceptably wide, IMHO. If it is over 2 you might not want to rule it out. thryoid.about.com can connect you (hopefully) with a doctor that is a little more open minded about thyroid treatment for those high/normal numbers.

Oh yeah, if you rule out thyroid completely you might just try the gluten-free diet. I had a lot of continuing hypothyroid symptoms even after treatment. But they all went away after going gluten-free. Actually, it helped 50% going gluten-free, the other 50% went away when I gave up dairy.

As far as treating blood sugar issues and an emerging diabetic, I think the best wisdom is treating it with diet and optionally drugs. You might want to check into Dr. Bernstein's diet or any diet that reduces starches and sugars (drastically). The key words here are hyperinsulinism, or metabolic syndrome.

Good luck to you both!

Oh! While I'm thinking of it, I saw something on Mystery Diagnosis about a woman who gained weight hugely. It was a real mystery until they diagnosed her with a condition where her cortisol levels were abnormally high. I think it was caused by a tumour or something. Very rare, but still a possibility.

[annacsmom]

I totally agree with Nancym. My daughter has Hashimoto's hypothyroidism very badly, and was only one month ago diagnosed with celiac. I know that gluten is the poison which has caused all of her autoimmune problems. Please read up on Mary Shomon - an expert on HH. Lab levels are way too high. I believe anything over 2 can be too high. Let us know how she's doing.