My Dad

[LIS-Guy]

Been thinking a lot about my dad lately.

When I was 12 years old, he would have been 45, the same age that I am now. The man was constantly sick and fatigued, caught every virus that came within twenty miles of him. Always down, always tired. He was never able to do the same things that other dads his age were able to do with their kids. He was never 'diagnosed' with anything, and people generally thought he was lazy and unmotivated, which is absolutely untrue. Nevertheless, his health deteriorated over the next ten years and he eventually died at 55 of heart complications and multiple organ failure.

Now here I am in very much the same boat and it scares the pants off me.

I can't help but try to draw some connection between dad and myself. I have so many of his traits, it's scary. The terrible fatigue, the strange red rash around his neck and on his face. The chronic diarrhea. I've got it all. We were a family of seven sharing one bathroom, so believe me when I say that we were all aware of dad's bowel movements and his mad dashes to the potty. And the gas? Yikes! The man was a methane factory. I even share the disproportionate stomach size and terrible-looking fingernails and toenails. And we both loved bread. Oh my god. We'd go to visit grandma and she always had several loaves of fresh-baked bread that dad and I would polish off before we even left the house. It was like crack to us.

I just have this dread that whatever dad had, I do as well.

Looking forward to my Celiac testing next week, and I hope it provides some answers.

Thanks for letting me ramble.

LIS

[Mother of Jibril]

Hi LIS,

I've really worried about being like my mom. Her own mother had type I diabetes and died in her 30s. My mom, thank God, is still alive at age 61, but her health has been bad for as long as I can remember. She recently had to go on insulin because her diabetes is so out of control... she's also obese, has fibromyalgia, arthritis (knee replacement in May), chronic back pain, IBS, insomnia, high blood pressure and depression. When I was growing up she had her gallbladder removed and a hysterectomy for endometriosis... she also lost my older brother to a stillbirth when she was seven months pregnant. She always finds some way to sabotage her diet... bread, Christmas cookies... last weekend she was telling me how much she enjoyed a pumpkin malt. Ugh. I told her that malts have barley and gluten is addictive.

I've had a few of these problems too... depression, pregnancy loss, times when I was overweight (although I've improved my diet a lot in the last five years), recurrent abdominal pain, joint pain (knees and shoulders), gas and bloating. In August I found out I have hypothyroidism... a normal TSH is 0.1 to 3.0 and mine was 44.3. I am hoping against hope that gluten intolerance is the key to all these problems. Within 48 hours after going off gluten my abdominal symptoms improved dramatically. My mom is a wonderful, caring person, but she is always SO tired and suffering from her poor health. I do not want to be like that.

I had a blood test for celiac, but it came back negative (I had already been off gluten for five weeks). Now I'm waiting for my genetic test from Enterolab.

I wish you all the best! I hope you start getting some answers very soon.

[ShayFL]

I really hope for your sake that it IS Celiac (a highly treatable disease) and you can have perfect health after you heal. Of course, I dont want you to have a disease, but if everything comes back NEG, you will still have your worries, fears and dread that you will end up like your DAD. No diagnosis and poor health till the end. THAT is what I dont want for you. So I hope this gives you the answer and you can go gluten-free and start healing.

I hope that makes sense.

[LIS-Guy]

Thanks everyone.

Mother of Jibril, I'm real sorry to hear about your mom's health and your recent troubles as well. Sounds like the gluten-free diet is working well and I wish you continued good health!

ShayFL, I know exactly what you mean. I never thought I'd be hoping to be diagnosed with anything, but finding out I have Celiac would be a blessing. It would just answer so much, and since the 'cure' is dietary (no drugs, no surgeries, etc) I couldn't ask for better. The hard part right now, is continuing to eat the stuff when all I want to do is go gluten-free NOW and feel better!

LIS

[Mother of Jibril]

Exactly!!

You can take hormone replacement for hypothyroidism... you can stop eating gluten and celiac disease gets better. These are both highly treatable conditions. I hadn't quite thought of it that way, but you're exactly right. There are MUCH worse things to have.

I bought a celiac book... and the list of ingredients with gluten is a handy reference. What I found strange is that it keeps talking about "grieving" over the loss of these foods. I know what real, intense grief is like. I enjoy croissants and pizza, but I'm not grieving over cutting them out of my diet. Ditto for hypothyroidism. I feel like the happiest person ever to be diagnosed with a chronic autoimmune disorder. It gives me HOPE.

[LIS-Guy]

I find the 'grieving for food' thing a little strange too, but I guess it's all a matter of perspective. Personally, I've lost far more important things in life than croissants and pizza. Getting my health back and actually enjoying the rest of my life rather than dreading it, would be nothing short of a miracle for me. Grief? Grief is when you can barely get out of bed for four years and nobody can tell you what's wrong.

[LIS-Guy]

  ShayFL said:

I really hope for your sake that it IS Celiac (a highly treatable disease) and you can have perfect health after you heal. Of course, I dont want you to have a disease, but if everything comes back NEG, you will still have your worries, fears and dread that you will end up like your DAD. No diagnosis and poor health till the end. THAT is what I dont want for you. So I hope this gives you the answer and you can go gluten-free and start healing.

You know what boggles my mind more than anything, Shay? I've had three different primary care physicians over the past 5 years, none of whom ever mentioned the possibility of Celiac, or any autoimmune disease for that matter. Chronic fatigue, lifelong diarrhea, vitamin deficiency, recurring infections, obvious malnutrition despite eating healthy, strange rashes, gas, bloating, all the rest of it. Spent all kinds of money on neurologists, mri's and CT scans, endocrinologists, and ultimately they decided it was depression. One doctor even dropped me from his practice after finding me 'too difficult' to treat. Sent me a notice by mail. If Celiac is so prevalent, why in the world didn't anyone think to order a simple blood test?

[ShayFL]

This is exactly why I am now considering going BACK into nutritional consulting practice. I know soooo much more now than I did then and it didnt come from reading school books. I believe I can actually help some "hopeless" cases now.

I go in January back to my Doc who is a Holistic M.D. Last time I was there she mentioned me coming to work for her. I think I will take her up on it. I am an Artist too and since Art is a luxury item and sales have dropped, this is a great time for me to get back into nutrition anyway.

Wishing you well!!