Early Childhood Celiac Symptoms

[Kilpatrick]

I am the mother of a diagnosed (biopsy) celiac daughter who was misdiagnosed as having lupus at the age of 11 at Texas Children's Hospital in Houston. She is now 28 and is, since being properly diagnosed 4+ years ago and being gluten free since, thriving. Recently my 4-year-old grandson, the child of another daughter, has been manifesting facial and digit swelling, as well as low grade fever, aches, and pains. At the time of the first daughter's misdiagnosis we were told she would only live a couple of years so, understandably, we were concentrating on keeping her as comfortable, happy, and stress-free as possible, as well as the rest of our family. We concentrated on keeping her extreme acute facial swelling and itching rash to a minimum with constant Benadryl and Atarax, as well as carrying an EpiPen with us at all times. My problem at this point in time is I cannot remember if she also ran a fever in the beginning. All of our daughters (we have four) are now very aware and watchful for any signs of celiac in their children because, besides the daughter with celiac, we now have a 3-year-old granddaughter with celiac disease. She lived overseas when she first manifested symptoms and her very young parents did not notice if she ran a fever. The mother of the 4-year-old grandson is spending tonight sleeping on the floor beside her son's bed in the fear of his throat swelling, wondering if this is the beginning of the same celiac manifestations her sister had 17 years ago, or is this swelling symptom coupled with the fever a simple viral exanthem that all children get. Has anyone experienced fever associated with celiac reactions in their children?

[darlindeb25]

Hi, and welcome to the forum.

After reading your post I thought I should tell you about someone that has those same symptoms when glutened & that she (& other family members) are also very allergic to sorghum flour & the whole sorghum family.

I have a friend, this happens to her & to her grandchildren. My friend is 60 & gluten-free & her 26 YO daughter is now gluten-free and her daughter-in-law is diagnosed celiac & they have their two boys gluten-free. The two boys also get that face swelling & fever.

I think that this is a very serious form of gluten intolerance/celiac that might also be an allergy to gluten. As long as all of your girls are aware of the gluten problems in the family, they should first, have the kids tested, then go gluten free, no matter the results, and see if it helps.

My experience with sorghum was for silage use for animal feed. When it is growing, the actual plant looks so similiar to corn, I will not even give sorghum a chance. I am intolerant of corn also.

Good luck with your family. Feel free to email me for my friends email addy: darlindeb25@aol.com