Mr. & Mrs. Patriarch Celiac

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[ms-sillyak-screwed]

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[flagbabyds]

Here it goes, (be warned it is long...)

So I was born on June 14, 1990. All was fine, started walking at 10 months, and was very healthy. Then when we started introducing solid food other than baby food (don't know if that is considered solid...) at around 15 months, i stopped walking, talking, eating, playing, living. They thought at first it was just a virus, and didn't really care, then another month or so later, I got really sick, started throwing up and all. Could not keep any food down, even liquids I would throw up. They could find nothing wrong with me, so at 17 months I was first hospitalized at Packard at Stanford, Ca. They thought that it could have been cancer, so they did multiple spinal taps, with no positive. Then they thought it could be CF, but they couldn't get enough sweat out of me to do the test because i was so dehydrated. THe docs said, nothing is wrong with her, just stop breastfeeding, and don't pick her up as much.

Another month went by, with no other ideas, back in the hospital cause of major dehydration and other things. Well she is not waslking, so let's do a muscle biopsy in her quad... Nothing wrong there either. I went home from that surgery, and threw up all weekend long. All i would eat would be pancakes and crackers, but would still throw them up.

I was admitted again, and they still couldn't find anything wrong with me. They inserted feeding tubes, and a broviac catheter for IVs through the heart. Failure to thrive completely, and yet the doctors could not find out what was wrong w/ me. My hair was all gone, bloated stomach, constipation (which is why the GI told my mom after that I could not have celiac.) no fat on my body, sunken face/eyes,

basically every classic symptom of celiac, except for the D.

They finally tested the celiac in a routine blood test, just to see. The numbers were so high the GI doc said he had never seen them so high before. My Ped told my mom not to change the diet, and she didn't, she thougt that we might finally be getting a positive diagnosis of something. Biopsy showed... Guess what?!

NO villi left in the intestines. Completely gone, no wonder I was so anemic!

Went on the gluten-free diet and by a week later, was eating and playing and smiling for the first time in 5 months. They kept me for a couple more weeks, and I was doing so much better. Finally had the feeding tube disconnected (but not taken out...) and the broviac catheter removed surgically.

When I went home, completely differnt child than who was admitted to the hospital a couple weeks earlier. About a month later when i was in my stroller i ripped out the feeding tube, which was fine with my mom because we hadn't been using it at all.

My mom had found out later that the nurses had thought 3-6 more weeks I could have lived before my body would just crash and die.

A year later, my doc said he wanted to confirm the celiac by doing a gluten challenge. My mom out right refused, and he said that the diagnosis could not be confirmed because of the parents refusla to do a challenge, and I can not be diagnosed w/o a challenge ( we all know that is wrong now) We of course dropped him, and got a very good GI doc now.

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The moral of this is, we have all gone through so much, and just be glad to be living, and on the road to recovery .

I have been gluten-free for 14 years DF for a couple of months,

Thyroid Disease, and allergic to corn and soy.

Most important thing I've learned: ALWAYS CARRY RICE CAKES! never be w/out them always have some extra food in the car.

Advise: NEver be to careful, always carry rice cakes, and think on the bright side, look for the good things about the diet, don't wallow in the sadness about what you can/can't eat.

[Lisa]

Cheers to you Miss Molly

You can teach us all good lessons. Lisa

[Guest Viola]

Oh gosh... do I have to go back to birth??????????? That's soooooooooooooooooooo long ago.

Basically I was born before Celiac disease was even known 1946. I was a short, skinny child, then actually gained a bit of weight in my teens. Apparently this is common with the disease. Then all the problems started big time with the birth of our first daughter in 1966. I was now constantly ill, very thin and having trouble with join pain.

Next came the months carrying our second daughter. I was put into the hospital for a month before she was born because I continued to loose weight, and my teeth got so bad they were falling out and I had infections in my jaw bone structure as well as joint pain, and all of the bowel and stomach problems. It seemed the baby just took all the calcium and other vitamins, and minerals from my body.

After she was born ( I was only 110 pounds the day before she was born and she was over 7 pounds) the doctors couldn't figure it out, so I was sent to Vancouver for the gastric specialist to check me out. Aftern numerous tests the specialist came into the hospital room to give me H--- for waisting his time and the money of the medical system. And I should go home, service my husband and look after my family and quit playing at being ill. So, now I even had more problems. I was not only still sick, but my whole family, including my husband thought I was "playing for sympathy".

So, this went on for a good many more years. The girls grew and became teenagers having their friends come over. I was so skinny their friends asked if their mom was a heroin addict. Shortly after the girls left home I started to have monthly menstral periods... by that I mean every day of the month! Which of course drained every little bit of iron out of my system. So, the specialist decided that I needed a complete hysterectomy. I had the surgery after building my blood up. Things only got worse from there. I was always covered in bruises, joint pain, mood swings, jitters etc. etc. and I was down to 87 pounds. Finally my family doctor decided that he had heard of a very rare disease that was diagnosed to a relative in England. He would risk running the blood tests because otherwise if he didn't find it, I would literaly starve to death.

And of course the blood tests were a big positive, and scope proved it and after that the diet really improved my life, even though gluten free products were rare. I survived on fresh fruit, veggies and meat, for a long time before I got a computer and found the Kinnikinnick website

I am left with arthritis, costocontritis, flangitis, low iron and other vitamin deficentcies (sp). I used to be dairy intollerant, but that righted itself after a couple of years. I do have other allergies such as the rhubarb family, which includes Buck Wheat. But for the most part, I'm not complaining. I've been gluten free for 17 years now and guess it will be that way for the rest of my life, baring a wonderful cure. But heh!!! I'm way more healthy than I ever was before

Hope this helps, I'm sure I've forgotten something, but I have quilting students coming in about 20 minutes, so have to set up the sewing machines.

[Guest Robbin]

Thank you for sharing such an amazing story. Great advice too. You sure have a great attitude that is inspiring Thank you too, Ms. S for the thread idea.

[Lisa]

And life goes on, as usual

Thanks Shirley

[gabby]

I remember seeing a similar post a while back where everyone was posting their story. maybe have a look through the archives? If not...does anyone remember where these stories were posted?

[Generic]

I was diagnosed at the age of 13. It was considered very rare back then. I had all the classic celiac symptoms. I was litterally dieing. I went through a year of testing. The very last test they were going to run was the biopsy, if that came back normal they didnt know what else they would check for. I had been sick my whole life, but it was gradualy getting worse. I think what triggered it to get worse, was the death of my sister's first child. I had helped take care of her quite a bit. It was rather devastating to me. My biposy came back inconclusive. My mom decided to start the diet right away any way. I responded quite well. I grew about 12 inches in a year and a half. I have been gluten free ever since. I'm 31 now, so I have been gluten free for 18 years now. Yes, back then the gluten free products were very limited. You had to make everything yourself and it still sucked! LOL It's nice that there is web sites and so many products and cook books now. Life is definately getting better all the time.