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Helene

Help / Support For New Mom.

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Hello,

I'm Helene and my daughter has food allergies / asthma and I'm guessing celiac disease. I'm going to call her doc on Monday.

I'm curious if anyone has had a similar scenario to ours and can offer any info that might help me understand our situation.

When my daughter was an infant, she had excessive spitting up, diahrrea, and eczema. This was about age 9 months to 3 years old.

Around 3, we had food allergy testing and is allergic to egg, dairy, nuts, soy, dairy, and wheat.

She is sensitive to many many other foods which seem to change often.

Mostly her eczema is gone, but she has lots of mucous, frequent chest infections that lead to wheezing.

The wheezing is so scary for me! We have a nebulizer.

We avoid most gluten, although haven't avoided oats and some of the "hidden ingredients" which could be the cause of her continued wheezing and frequent infections.

Is wheezing and eczema common for celiacs?

Is it possible that the disease can cause her to be sensitive to other "non-allergic" foods?

Does this sound like a case of undiagnosed celiac disease?

None of our doctors ever mentioned celiac disease to me, which kind of irritates me. Also, I believe I read that it's genetic.

i think both my grandmother had undiagnosed celiac disease because she had rheumatoid arthritis so severley and ate lots of wheat everyday.

Also I think my mother might have it, she has thyroid issues and complains of stomach aches often.

What are your thoughts?

Thank you so much in advance.

I hope that I am finally finding some answers around my daughters health issues that have been such an intense struggle for our family for 4-5 years!

Thank you.

Helene

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Welcome, Helene! Our family has gotten a crash course in the many different ways that gluten intolerance may manifest, thanks in large part to our super duper silly girl. While our more "classical" celiac child was our introduction to gluten intolerance (thank goodness!!), it is her mother, sister, and brother that also suffer from the more insiduous symptoms of gluten intolerance - especially asthma and eczema issues. We have gone through several stages of trying to understand what is going on, and we have consulted with many doctors about our conditions. For us, we have some pretty classical celiac issues, but our situation is complicated by a lot of seemingly "allergic" issues that don't fit so neatly into the current, conventional understanding of "celiac" (and the "allergic" issues prevent any further testing for "classical celiac" diagnosis).

Our family seems to fall into a gluten super sensitive category that requires extreme diligence to gluten elimination, including environmental issues. At one time, our list of food eliminations was very lengthy. But after much research and trials of foods that were diligently sourced to ensure no cross contamination, we have found that the primary trigger for our symptoms appears to be gluten. It was astonishing to recognize how extreme our gluten sensitivty is! We continue working on our health, and it has been quite a journey already. School was a really big setback to our children's health, and we have had to implement some rigid protocols to protect our family. We do maintain a gluten free home, and we have fully eliminated oats. We maintain a gluten, dairy and soy free diet while we try and more fully understand the extent of our dietary requirements.

I think that you will find several people here that understand many of your struggles, but I don't know that the chronic respiratory and eczema issues are "classical celiac" issues. In our many medical consultations, we have found many doctors that recognize the chronic respiratory and eczema issues as being rooted in gluten intolerance for our family. And there are a few here with both celiac and gluten/wheat allergy issues, like our family has, but they don't seem to be the majority. Good luck in your discovery process!

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Yes! We have a similar history with our son.

As a baby and young toddler, my son had long periods of screaming and crying in the evening. He also had eczema. He'd have asthma attacks as a baby and toddler, which we repeatedly went to the hospital for - I couldn't always tell what had set it off. I was breast-feeding him exclusively as a baby, then kept breastfeeding him till after he was 3. I tried cutting out all sorts of things from my diet without much success. I had him scratch tested and he showed up with allergies to all sorts of things - dairy, soy, dust, all kinds of pollen. At first I did homeopathic remedies and cleaned obsessively & got rid of carpet, which seemed to help for a while.

I tried diet after diet for him - but I couldn't make the connections - I was always looking for what the problem foods were, but it seemed to shift constantly. Little did I know I was looking at the symptoms, not the cause.

As he got older, he "outgrew" a lot of these problems. He was able to eat normally, play outside, and stopped having asthma attacks all the time, though he would get hives. I didn't really worry any more. But his seasonal allergies just kept getting worse. We medicated him, and after two years of constant pills we started allergy shots. He still has some seasonal allergies, but not nearly what they were before. The shots didn't seem to help until we cut out corn due to a positive IgE test. Then his hay fever symptoms went away until the pollen counts came back up over 9. He's almost done with his shots now, and we are going to finish out the course.

He also had regular aches and pains, which no one but me took seriously. I'd tell the drs and they just said "he's growing." People would think he was just being lazy or didn't want to participate in things when his legs hurt and he'd stop walking and beg to be carried. Nightly stomach aches were attributed to "anxiety." Random puking was because of swallowing snot at night from his chronic runny nose. The chronic runny nose was supposedly "seasonal allergies," no matter the time of year. Also, despite being very bright, he had severe dyslexia - inexplicably horrible some days and not as bad on others. He also had some hyperactivity and especially when younger would do sensory seeking stuff. He'd run while shaking his head with his eyes rolled back. He'd BITE. He'd bash his head into me all the time. He'd get violent and laugh uncontrollably while hurting someone. This was worst when he was about 3-6. An allergist told me that it was because his inflamed sinuses were pushing on his brain.

At 10, he had a crisis where his hip filled with fluid. This came on the heels of his having had pertussis (yes, he was vaccinated) and pneumonia as a compliction of that. The doctors treated the acute situation with emergency surgery and a course of strong IV antibiotics, thinking it was "septic hip." That usually occurs in younger kids and is usually from staff. They ran tons of blood work and tested the fluid from his hip. The results came back inconclusive and did not show infection, though they did show high inflammation. The ID doc said it looked like it could be autoimmune - but did not think to order tests for celiac! He tested for lupus and that was negative. The tentative diagnosis was reactive rhumatoid arthritis from the pneumonia.

Research on my partner's part pointed us toward celiac. Despite being repeatedly told by doctor after doctor that his previous joint pain and gut problems and allergies and intolerances and asthma and behaviour stuff couldn't possibly be related, a drastic change to our diet (GAPS) fixed ALL of those things. (Most surprisingly, in addition to improved GI health, he went from not being able to read to reading with total comprehension on an 8th grade level in a few months) Unfortunately, it wasn't until AFTER going gluten free that we found out that you have to have gluten to do the testing. We put his sister back on gluten and got her tested, but it's just too risky to put our son back on gluten for testing. He gets obvious and awful reactions to gluten and I don't want him hospitalized again just for a test to tell us what we already know.

The reading I've done and our experiences have pointed me to the conclusion that our digestion is the basis for good health - not just physical, but emotional and mental and neurological as well. Some people are born with more sensitive systems, and digestive issues can run in families. Gut flora is passed on from parents to children, and the way imbalances show up can be different in each individual. If you could head off the problems now it would be so amazing.

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Continuing...

GAPS is the Gut and Physchology Syndrome. The basic idea is that imbalances in gut flora, and damage done to the gut by foods and toxins, prevent the body from being able to properly digest foods. Additionally, proteins from foods begin to permeate the damaged gut walls, wrecking havoc in the body. This can result in allergic reactions, digestive intolerances, and autoimmune reactions. Additionally, some of these things make it through to the brain, causing mental and emotional disturbance as well. When a system is really out of balance, pretty much anything you introduce will provoke a reaction. This is part of the reason so many people with allergies end up with so many more allergies, especially of the IgG variety, and why favorite foods most often show up on the ELISA tests - they are picking the the antibodies to whatever you've been eating lots of! (On a similar note, many people who have a problem with gluten think they are lactose intolerant - damage from the gluten destroys the small intestine's ability to produce lactase!)

By healing the gut and permanently eliminating the most major causes of damage, eventually many people can reintroduce foods that were a problem in the past. The GAPS Diet and protocol (including detox and probiotics as well as diet) is aimed at healing the gut (or not damaging it in the first place :)) and establishing healthy gut flora.

The diet is based on the Specific Carbohydrate Diet (SCD), but goes a bit further. The idea behind SCD is that the body has trouble digesting di and polysaccharides. The only sugars should come from monosaccharide sources. Candida is also a major contributing factor to people's gut imbalance... and candida eats sugar! Sugar that doesn't get processed properly by the gut ends up getting processed by Candida and other bad bugs in the gut, causing gas and causing population explosions of these nasties. Candida actually has a stage in its life cycle where it grows tentacles that pierce the gut lining, causing more damage. Also, there is a growing scientific body of evidence that GMO foods and the ways foods are processed is contributing to the increase in allergies and other health problems. One more thing - saturated fats are essential to many, many processes of the body.

So... the clear basis of the GAPS approach is to 1) cut out the sugars to starve out the bad bugs 2) introduce the good bugs 3) only eat organic, foods that have NOT gone through industrial processes (even pasturization) 4) get lots of healthy, saturated fats 5) get your main calories from nutrient-dense foods. (Bone broths are a staple!)

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Ugh, more... I should add that before GAPS we did just go gluten-free for a couple months. This did result in big improvements for our son, but didn't take care of everything. Whenever he'd get cross contaminated he'd get the joint and bone pain back, brain fog, feel like crap, etc. He has not been CC'd since we totally cleaned our kitchen, stopped eating foods prepared by other people (or factories), and started GAPS.

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