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Please Help Me! I Am Losing My Mom To This Disease!

JulieMcF

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JulieMcF Newbie
JulieMcF
Posted

My mother is 50 years old and was diagnosed with celiac disease about 1 year ago. On top of that, she is also allergic to shellfish, kiwi and is lactose intolerant. Whenever she consumes any of the above allergies, she automatically experiences anaphylactic shock. She always carries a few Epi-Pens and Benadryl on her at ALL times. She is extremely careful at what she eats on a daily basis. However, day by day, she is having more and more reactions to foods she is allowed to consume. I would love to find her some help, whether it be a doctor or nutriotionist. My mom is 5'5" weighing about 110lbs and losing more. I watch her wasting away in front of me every time I see her. She lives in Raleigh, NC and is willing to travel to seek some sort of treatment. Her quality of life is not acceptable and she is at the point where she is terrified to eat anything... even the foods she's allowed to eat, i.e. rice cakes, raisins, etc.... If anyone could offer some advice or point me in the right direction I would greatly appreciate it. Knowing that I am powerless over the situation is a terrible feeling. I can no longer sit back and watch my only mother go through what she is going through. Again, I appreicate you taking the time to read this and any advice you can offer. Thank you.

Sincerely,

Julie McFarlane

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happygirl Collaborator
happygirl
Posted

Has your mom been tested for eosinophilic disorders? www.apfed.org

Best of luck, and I hope that you find some answers for your mom.

Lisa Mentor
Lisa
Posted

Julie,

I can hear the concern in your voice. I live in NC, but I am not familiar with any doctors in the Raleigh area.

My only meager suggestion is that your mother stick to the basics of foods, chicken, beef, pork, rice, potatoes, fresh veggies. Keep processed foods to a minimum.

If you mother can be comfortable with the basics, perhaps that will give her some confidence that all food is no evil. Boost and Ensure are both gluten free and may help her put on some weight.

Quaker Rice Cakes are well know for cross contamination issues. Lumberg (sp?) Rice cakes are produced on dedicated lines and she can find those at Whole Foods, or Fresh Market.

My recommendations are gear toward a Celiac diagnoses, but perhaps, you mother is facing other issues as well.

We have several members here from Raleigh. Perhaps, you might start a thread "Raleigh Celiac Doctor Needed", might generate some answers for you.

You sound like a wonderful daughter.

juliela Rookie
juliela
Posted

Hi,

I'm so sorry to hear of all the problems your Mom is having. I think there are many of us here who know exactly what it feels like to be afraid to eat and it must be even worse dealing with anaphylactic allergies. Here are some listings in NC, but if your Mom is willing to travel, maybe she could get an appt. with one of the University celiac research centers such as Columbia, Maryland or Chicago? Also, until she gets an appt- she could keep a detailed log of the foods and products she uses and the reactions that she has. Dr. Kenneth Fine does food allergy testing, that I believe may be able to be done at home with a kit. Open Original Shared Link

Best of Luck.

Julie

John Baille, M.D. - Gastroenterologist

Division of Gastroenterology

Duke Medical Center

Durham, NC 27710

Ivor Dennis Hill, M.D.

Clinical Pediatric Gastroenterology

Chief of the Division of Pediatric Gastroenterology and Nutrition

Bowman Gray School of Medicine

Winston-Salem, NC

Tel: (910) 716 4431

Martin Ulshen, M.D. - Pediactric Gastroenterologist

North Carolina School of Medicine

CB # 7220 UNC

Chapel Hill, NC 27599

Tel: (919)-966-1343

Juliebove Rising Star
Juliebove
Posted

Sounds like she needs an allergy test to see what all she is allergic to. I have food allergies but mine are not the life threatening kind. I still have issues with food. If in doubt, I don't eat it. I am not wasting away though. Still overweight. :( I buy a lot of my food at the local health food store where the owner is a celiac.

For a while I attempted to do a raw, vegan diet. It was working for me at first, but I have additional medical problems and I have a hard time digesting things such as raw fruits and vegetables. I still think that's a good way to go though. Whole fruits and vegetables, nuts and seeds. Not much chance of having a reaction to those things unless you have allergies to those things. Daughter is allergic to peanuts and bananas as well as some other things. I have an almond allergy. So we do have to be careful with the nuts and seeds.

lovegrov Collaborator
lovegrov
Posted

Might also look into bacterial overgrowth.

richard

geeze Rookie
geeze
Posted
My mother is 50 years old and was diagnosed with celiac disease about 1 year ago. On top of that, she is also allergic to shellfish, kiwi and is lactose intolerant. Whenever she consumes any of the above allergies, she automatically experiences anaphylactic shock. She always carries a few Epi-Pens and Benadryl on her at ALL times. She is extremely careful at what she eats on a daily basis. However, day by day, she is having more and more reactions to foods she is allowed to consume. I would love to find her some help, whether it be a doctor or nutriotionist. My mom is 5'5" weighing about 110lbs and losing more. I watch her wasting away in front of me every time I see her. She lives in Raleigh, NC and is willing to travel to seek some sort of treatment. Her quality of life is not acceptable and she is at the point where she is terrified to eat anything... even the foods she's allowed to eat, i.e. rice cakes, raisins, etc.... If anyone could offer some advice or point me in the right direction I would greatly appreciate it. Knowing that I am powerless over the situation is a terrible feeling. I can no longer sit back and watch my only mother go through what she is going through. Again, I appreicate you taking the time to read this and any advice you can offer. Thank you.

Sincerely,

Julie McFarlane

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geeze Rookie
geeze
Posted

Julie: I live in Durham, am 68 and was diagnosed by blood test under 4 months ago. I was referred to a nutritionist and my doctor did anything I asked of her as regards further blood testing etc. But--I just don't think she knows much about celiac - maybe just textbook stuff. At the urging of a neighbor I went to an acupuncturist doctor here in Durham and have been tremendously impressed with him. I no longer have any of the abdominal symptoms I have but I think my energy level is slowly rising after following his advice. I would be glad to share any information with you or your mother or would be glad just to talk and share. I do not think he is a miracle worker but he is interested and knowledgeable. Let me know if I can help. Gladys - Geeze

Ursa Major Collaborator
Ursa Major
Posted

Your mother wouldn't have to worry, if she eats only food she has prepared herself from fresh ingredients. Her enemy is obviously processed food, as you can never be 100% sure it is safe. It is a pain when you have to avoid pretty much eating anything prepared by others, but would be worth it in her case.

  • 3 weeks later...
Lillian Newbie
Lillian
Posted

Hi, If you are willing to come to Chicago, I have a terrific GI specialist whose group does tons of research about celiac disease. He is from Rush University in Chicago. His name is Dr. Keshavarzian. Please email me and let me know if you want any more info on him. There's no reason why your mom can't have a quality life. It just takes being creative and very careful with our food intake. I've been doing this for almost 2 years and it works. Yes, I get upset and sad about not eating certain foods, but there are worse things in the world. My problem is that I put on weight because I'm getting healthy. I hope your mom gets healthy soon and gains weight also. Yes, it is very possible! Good luck. Lillian

My email is LillianSKlein@hotmail.com

  • 2 weeks later...
JNBunnie1 Community Regular
JNBunnie1
Posted

If she keeps developing more reactions to new foods and she's already gluten-free, it may be a good idea to look into things like MCS, multiple chemical sensitivity, which can happen if you've been exposed to a really toxic chemical, or she may be dealing with heavy metal toxicity, which is always a good thing to ask your doctor about. Heavy metal toxicity can cause reactions to foods that dissappear once your system has been cleansed and calmed down.

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