NeuroTalk Communities - Gluten Sensitivity / Celiac Disease

Holidays and GF diet

happyisme09 — Sat, 14 Nov 2009 20:45:48 GMT

What to do?

If you are invited here and there and can't possibly eat the breads/cookies/cakes being offered, what do you say or do?

Do you get support from family/friends about gluten free or do they try to push "oh just a little won't hurt you?"

This will be the first year for my dd, but I feel I prepared the family years ago when I: brought my OWN water, had organic veggies in purse :eek: and/or or just plain didn't eat at all. :laugh:

Gluten Intolerance and seizures

Shark67 — Sat, 07 Nov 2009 21:37:32 GMT

Hello, everybody!

I am new to this group but I need help and guidance! My son had febrile seizures when he was 5 in Sept 2007 and again in October 2009! This past Thursday, he had an episode at school in which he seems to have fallen asleep. He could not be awakened for 10 minutes!! When he did wake up, he acted like he had indeed napped. Nevertheless, we took him to the ER. After he was admitted to Children's Hospital of Michigan, they neurologists wanted to start him on Keppra for seizures. I take Keppra and do not want the side effects to happen to my son. BTW, my seizures are likely caused by hydrocephalus. His eeg and MRI are clear and normal. My wife and I heard of someone who is allergic to gluten has episodes like my son had -- including the seizures (w/ convulsions). Has anyone ever heard of or experienced this combination?

Thanks for your help!

Jeff (Jim's dad)

Looks like I have Celiac.....

realestatemom — Tue, 03 Nov 2009 01:08:08 GMT

I believe I've been misdiagnosed for years. I began having problems with my toes 16 years ago. I had extreme itching, lost toe nails, etc. Doctors said runners feet, fungus, yeast, then said Dermatitis. Feeling defeated, I gave up but continued changing my environment trying to make it better. I've changed soaps, shampoo's, detergents, flooring, footwear, etc.

In the mean time, I had 2 miscarriages and my youngest child has Down syndrome. I have anemia, migraines and chronic fatigue. I had partial hysterectomy due to a large fibroid, I have lived with constipation and flatulence all my life and I get terrible stomach cramps during and after some meals causing me to have to leave important or celebratory functions because of the pain. I have a fabulous, supportive husband but I have no sex drive and I am on meds for depression, anxiety and adult ADD.
All that and my toes are worse than ever, they now turn corpse purple if I'm standing or sitting and the skin is so thin that it I stub one, it explodes like a water balloon or peels like a banana.

At the beginning of the year my husband urged me to seek medical advice again, fearing that I might lose my toes (they look as if I have diabetes but I don't and they do heal very quickly). Under his persistance I begrudgingly set out on my search for answers. First, to the Dermatologist who said �poor circulation, nothing you can do�. Then to Podiatrist, she said Reynaud�s and sent me to Cardiologist, said no to Reynaud�s, ran cath., said very little blood getting to toes, connective tissue disease, sent me to Rheumatologist. She told me that she was going to draw several labs and for some reason I insisted she test for Celiac. She thought I was crazy but ran it anyway. Got the results 10/30/09 and the celiac panel was the only thing that came back positive. She was suprised but says there is no connection between CD and my toes. I believe there has to be.

GliadinIGA 137.2(ref 0-30)
GliadinIGG 56.7 (ref 0-30)
Tissue Transglutaminase IGA 70.9 (ref 0-10)

I'm shocked but I'm not. It explains SO much. My Mom has IBS, Crohn's, severe migraines, depression, kidney issues, etc.

The funny thing is that I get my son with Down syndrome check every year but never thought to check myself. His last results don't make much sense to me now that I see mine. They said his was 3 with a range of less than 5. Can anyone help me understand that?

My 13 year old has always been my healthy kid but has had a lot of stomach issues and headaches over the last 2 years. We've thought it could be stress but now I'm thinking he could have CD. He's getting tested Thursday.

Does anyone have any tips or suggestions for me? I'm thinking that we'll probably all go gluten free. My youngest isn't positive yet but since he has DS and some Autism characteristics, it can't hurt.

understanding gene test results

LJmom — Wed, 28 Oct 2009 02:59:07 GMT

I have a lot of questions about test results, don't I?! Your help has been invaluable.

My daughter had gene testing through Enterolab (cheek swab), results:

HLA-DQB1 molecular analysis, allele 1: 0202
HLA-DQB1 molecular analysis, allele 2: 0503
Serologic equivalent: HLA-DQ 2,1 (subtype 2,5)

EnteroLab's explanation said that she didn't have the main HLA-DQB1 genes predisposing to celiac (0201 and 0302), but she had two that predispose to gluten sensitivity (any DQ1, DQ2 other than 0201, or DQ3 other than 0302). Therefore each parent must have one copy of the gene. DQ5 is a subtype of DQ1.

I had gene tests through a blood test and the results said:

DQ2 (DQA1 0501/0505/ DQB1 02XX) - negative
DQ8 (DQA1 03XX, DQB1 0302) - negative
Greater than 95% of celiac patients are positive for either DQ2 or DQ8.

I'm struggling to know if I was even tested for the same things my daughter was, and which specific genes I do have, since apparently her test was more specific to genes that predispose to gluten sensitivity and mine only looked for those that predispose to celiac?? My best guess is that these results are telling me that I don't have a DQ2 or DQ8 gene, so the gene my daughter got from me must be the DQ1 aka DQ5. But I'm pretty confused.

Thanks.

two supplements i have questions about-

limpia — Wed, 28 Oct 2009 02:02:49 GMT

Hello everyone-
I havent been here in quite some time. I discovered that i could not have milk , could have limited gluten, and sugar- and yet when i avoided these foods, i still was constipated. Anyone ever try Candex? This seems to actually work, prob becasue it is killing the cell walls of the candida, as the pr says. Does any one know it, and if it is safe? anyone ever try it?

Next question concerns a diff siupplement that my son is trying. Background- due to neuro symptoms and constipation, he does without dairy, gluten and sugar- He has been taking a combo of vit c and dmae. Anyone know if this is safe(dmae) This he takes, as well as magnesium and a multiv, but this is something he likes for his skin. Is this safe? i am afraid i turned him into a vit popper. thanks limpia

New and Confused

happyisme09 — Sun, 25 Oct 2009 15:29:34 GMT

Hello everyone.

My 24 yo daughter, who has returned home due to divorce and college, was diagnosed with Hashimoto's in 2006. Surgical removal of left lobe and is on replacement hormone meds.
Her new doctor has been testing her for everything and we have found intolerance to gluten/wheat/casein-cow milk/soy/maize-corn, which caused a new batch of tests Celiac Disease Comprehensive Panel -- Tissue Transglutaminase Antibody, IGA <3 U/mL (I gues she is negative??)
IMMUNOGLOBULIN A 515 H 81-463 mg/dL (this is high)

But that is it for blood I believe for Celiac Disease for the next one is Magnesium, RBC and IGF-1, then others for hormones and cortisol, etc.

I have her scheduled to meet with a gastro for the biopsy to determine the celiac. But now after being here, I see most blood works cover more areas than what she had done.
She works part time, attends classes full time and we don't know what is causing her problems. I don't even know where to begin?? We have been blaming hypo thyroid for all of her ills and poor care by her doctors. Now, this is something way different and new to us.
Is it adrenals? Thyroid? Gut? It seems as if her problems became worse during a very stressful separation/divorce, moving back home, beginning classes again. Could it just be the hashi's and stress?
Should I find a doctor for her that specializes in auto-immune disease? I have no idea what I am doing!
Any and all info - put in as simplest terms as possible for the noob - would be greatly appreciated. Her doctor now has a let's wait and see and her mother wants to get all the info yesterday! Thanks.:hug: