My Family Suffered For Years - Celiac and Crohns

I am 51 years old, my brother is 48 years old. As a baby he almost died. He spent the first three years of his life in Alder Hey Children's Hospital where it was discovered that he was a Celiac and suffering from Celiac's disease. The disease then was virtually unheard of. He is still very thin now and suffers terribly with his stomach. My youngest daughter was born in 1984 and like the others she was breast fed. It was only when I graduated her from baby food onto our food that the problems with her bowl started. She was seven months old and so constipated that she was bleeding from her bottom, she cried constantly both day and night. The doctors in our surgery wouldn't listen to me and said I was overreacting and just tired. When the one doctor we always seemed to get when we telephoned for an appointment learnt of my brothers celiac's disease he laughed at me, and said there was little to no chance that my daughter could have inherited it. He gave me lomital to ease her problems and told me to feed her bran to ease her constipation. She grew up to be very very thin, but our entire practice of doctors kept saying she was fine and that i was thin too so what did I expect. All of my daughters were a slim build but none of them were as thin as Teressa and they didn't look undernourished like Teressa. My poor little daughter has suffered since she was 7 months old. She now eats a wheat & dairy free diet which keeps her symptoms at bay. She has bled when going to the toilet all her life and suffered pain in her lower stomach that's caused her to collapse. She gets a lump in her bowl close to her hip bone that sticks out through her tummy and pain that she said feels like something is ripping inside. My friend was recently diagnosed with Crohn's disease and I didn't know what it was until now. Its only today that I have found this website and discovered the symptoms of Crohn's disease all of which my poor daughter has and on occasion still suffers. Teressa is 27 years old now and 7 months pregnant, she weighs under 7 stone. Not even her present GP will listen to us. They told us that eliminating things from the diet can be dangerous even when not pregnant and gave her fibre-gel!! They showed no concern over her weight and even had the cheek to suggest an eating disorder!!

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My Family Suffered For Years - Celiac and Crohns NEW
by: Lydia D.

I do empathise as I know how patronising and useless a certain percentage of the doctors can be.

As a laywoman, I think that your daughter's weight is very low to be carrying a child. I can't help thinking of the damage that the child may suffer if her malabsorption is not attended to. I don't understand why her current doctors do not recognise the danger that the baby is in. She does need to find a doctor who will listen to her and treat her appropriately. A way of doing this is for her to keep a patient diary. She should record her weight, temperature, note any symptoms, what she ate (kilocalorie counting), how she felt, etc.
She could use the Crohn's daily activity index
http://www.ibdjohn.com/cdai/

The Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The Comparative Pain Scale: http://www.tipna.org/info/documents/ComparativePainScale.htm

She might well have damage from year-long untreated coeliac disease and may be unwittingly eaten or drinking something with gluten in it. Most aromas have gluten in them and they are found in most packet foods and some drinks. Stick to home-made lemonade and own cooking.

As you know, but the consulted doctors didn't, the disease is definately inheritable:
http://www.webmd.com/digestive-disorders/celiac-disease/news/20080303/new-celiac-disease-clues

I suggest that she does her own research and puts together a file of her researched articles to take with her. Together with the patient diary with kilocalories eaten each day. This should help the doctors understand the situation better. If she is eating over 2000 - 3000 kcal per day and is not able to put on weight then something is wrong.

What is very important is that she obtains copies of all her medical records.

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