[Jessie]

Hi everyone,
I am Jessie, mom to 3 kids. My oldest is 8 1/2. She has multiple disabilities. She is developmentally delayed, has arnold chiari malformation (2 years post op), low vision, and hypotonia. After lots of bloating and lethargy over the past year, I brought her to a pediatric GI. We just had our follow up yesterday and the doc said she tested positive for celiac. They drew more blood for the gene marker test. But given the first test and my daughter's symptoms, the doc is quite sure she has celiac.

You would think that after having dealt with tons of health issues with this child, that I would not leave a doctor's office with questions. I was just kind of stunned by this information. I'm trying to figure out what the blood test was that she had. I know it is an antibody test. The doc said that my daughter's level was 8, and that is high. Anyone have ideas of what test this might have been?

My other questions are: Does the whole house have to be gluen free? Does anyone else have a child with celiac and developmental issues? My daughter is not autistic, but she does have a few autistic like behaviors and I am wondering if they could be due to the celiac.

Thanks in advance for any information. I'm sure I'll be turning to you knowledgeable people as we figure out how to incorporate this newest diganosis into our lives.

Jessie

[MotherMoon]

First, be glad you got a diagnosis. Many never do. We just wing it ourselves.

Personally, I try to keep the house as GF as possible. Initially, that started from fear of cross contamination. Then after genetic testing and I realized both DH and I carry the gene for non-celiac gluten intolerance (DD has two copies), I felt all of us needed to be GF. DH won't agree. But, he eats what I cook for the most part. I do keep him a loaf of bread in a separate freezer with two frozen pizzas that are not GF. I do not cook after 9 pm. DH often returns that late on evenings he hunts. So, he gets his gluten stuff. A separate toaster and pizza pan and cutter are set aside for him. Now, I have been diagnosed with B12 deficiencies most likely from malabsorption issues. My dad was diagnosed celiac years ago. I am rambling and lost my train of thought. Oh, we are a mostly GF house now because 3 of the 4 are on GF and dairy free diets.

Developemental issues: Samantha was very close to an autistic spectrum diagnosis and a Sensory Integretion Disorder diagnosis prior to going GF. (She was always DF.) She was just under 3 at the time. Within a week she was potty trained (she wanted to be out of diapers for a year), she would at least put shoes on. They didn't stay on long. After a little while, she would walk through grass barefoot. She'd scream before she hated it so much. But, she wouldn't wear shoes. She had little eye contact. And you could only touch her with "permission or invitation". She is still like that to an extent now but she is cuddly and loving, sometimes even on your terms. And, she will drive you nuts wanting to be in your face. The only thing that really didn't change is Everything goes in her mouth, even at nearly 7 years old. I did see regression for a while, especially with the sensory issues, when she got gluten.

I have a blog: http://www.nurtured.com/glutenfree with recipes. Everyone here is very helpful. Also, SillyYaks yahoo group and Celiackids yahoo group are great.

Welcome.

[jccgf]

Hi Jessie,

If they ran a single antibody test, it was probably the anti-tTG, and when that is positive it is almost most certain one has celiac disease (95% positive predictive rate). There are other antibody tests sometimes run in conjunction with celiac testing (anti-endomysial and anti-gliadin), but the anti-tTG is sometimes used as a stand alone test.

There are a couple different ways that lab ranges can be set. I am more familiar with one where > 30 is moderate to high positive, but I know I have heard of labs who use ranges than are in the single digits. It depends on the lab. You might want to ask for a copy of the lab report, and that will give the ranges on it. Or, if you know the lab, sometimes you can google up the ranges they use.

Some of your daughter's other health problems may possibly be related to underlying celiac disease. Hypotonia and development delays are also associated with celiac disease.

I've heard remarkable stories about children who weren't walking or talking, doing so once they removed gluten. I've heard of great leaps forward in regard to various learning and developmental delays (including visual/spatial, eye/hand cooridination, balance) in some children. So, there is at least a chance for some improvements in those areas, although, not always so.

You can check out The Gluten File for more on these subjects...also browse through the pages on various neurological manifestations of gluten sensitivity.

Diagnostic Testing
ADHD (there is some info regarding developemental delays, etc, here)


Because celiac disease is a genetic disease, your daughter's doctor should recommend that every blood family member be tested. You might want to browse The Gluten File keeping in mind any family medical history... as it might shed new light. Also, celiac disease can develop at any age in life, so ruling it out at one point does not mean that it is ruled out forever. Periodic retesting should be done every 3-5 years, or sooner if symptoms arise.

Here are some excellent overview articles:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD (AAFP)

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)


As for whether to keep the entire house gluten free... you have a little time to ponder over that for a bit. There are people who successfully manage mixed households, while others feel it easier/better to make the entire house gluten free. We should probably begin a whole new thread just to discuss those considerations.

I do keep a gluten free house...and that began mostly to support my daughter, rather than cross contamination issues. I'll explain all my reasoning later...have to run for now!

Hope this helps!

Cara

BTW... do not worry! The diet is very manageable once you get familiar with it. There are definite obstacles and frustrations, but it is very doable.

[KimS]

We went completely gf in our house for two reasons:

1) fear of contamination

2) fear of one child feeling resentful about the diet

This was a god-send because we found out that our 'symptomless' child grew better without gluten and had dairy related enuresis... Dh lost a lifetime of symptoms and I also lost a lifetime of symptoms that I learned to 'overlook' as best I could through the years. (headaches, migrains, joint pain, constipation, moods swings - who wouldn't be moody? etc. etc.)

Now, if we get glutened... we all know it!

Four years later and I couldn't be happier with the improved health of every member of our family. And the children are too because they won't touch anything with gluten (or with unknown ingredients) at all! We've had enough 'oopses' that we are all very aware of how crappy (sorry), even the tiniest amount of gluten will make us feel.

But you have to get 'pure' first to be able to see the difference.

[RathyKay]

Originally Posted by Jessie

Does anyone else have a child with celiac and developmental issues? My daughter is not autistic, but she does have a few autistic like behaviors and I am wondering if they could be due to the celiac.

Welcome! I don't read here as often as I used to, so I missed this earlier this week. My son has brain damage as a result of severe hypoglycemia at birth. As a result, he has epilepsy, poor vision, lousy fine motor skills, and is developmentally delayed. A few years ago, we figured out that dairy is his biggest seizure trigger. As a result of being dairy-free, we were able to take him off his seizure meds (yay!). Eleven months ago, we gave gluten-free a try and discovered he has a problem with it, too.

I had genetic testing done on Tom. He does not have either celiac gene, but does have two versions of DQ1, which tend to have more neurological symptoms than gastro ones. Since going GF, he seems to be more aware of his world, his fine motor skills have improved, his vision is changing (I *think* it's going in the right direction), he no longer runs like a toddler (legs wide apart). It's definitely been worth the effort.

I had to laugh at your autism comment. I usually say, "Tom is not autistic, but he does have some autistic tendencies." Right now, he's obsessed with clocks and learning to tell time. We have just begun taking him to a DAN! doctor (Defeat Autism Now!). (Insert my "Tom is not autistic..." statement.) We're trying to heal his gut, and using lots of supplements to get his body back to a more normal state of being. One comment from the doctor was that things that inflame the gut can also inflame the brain, yielding autistic characteristics.

I don't know a lot about chiari, but I thought it could also be responsible for autistic characteristics. Did the surgery completely fix it? (I don't know enough about chiari to know how much surgery can fix it.)

We are a mostly GF household. Mr. Kay refuses to follow the diet; he's low gluten. He has oatmeal and some forbidden candy in the house. Otherwise, he eats what we eat, and enjoys his gluten at lunch at work.

Good luck in your journey.

[Jessie]

Thank you everyone for all the replies! We are going to go as gluten free in our house as possible...but i think it will take a while to get the hang of it.

RathyKay, chiari doesn't typically cause autistic type symptoms. It does cause neurological problems that I guess could be present in autistic kids. After her surgery, DD had a big jump in her speech abilities. Chiari affects the flow of spinal fluid, so it causes pain and all sorts of goofy symptoms. Like gluten intolerance, the symptoms vary hugely from person to person. After her surgery, all her pain was gone and she seemed to be neurologically a little bit improved...better balance and speech and stuff like that. The main deal with this child is that her brain is just shaped wrong. Her vision is poor because her optic nerves never developed. The normal brain is sort of egg shaped, but hers is rather rectangular.

So I do have one more question that I'm thinking about. Her antibody test (I don't know which one it was) came back positive. According to my reading that indicates a 95% chance for celiac. We are waiting for the results of her gene test. Do those odds mean that it is possible that she has the anti-gluten (or whatever) antibodies, but does not have celiac? Has anyone here tested + for the antibodies but not had the gene? Even if she doesn't have celiac I'm taking her off gluten.

I am finding this forum so helpful as we prepare to make this change!

[Jessie]

Thank you everyone for all the replies! We are going to go as gluten free in our house as possible...but i think it will take a while to get the hang of it.

RathyKay, chiari doesn't typically cause autistic type symptoms. It does cause neurological problems that I guess could be present in autistic kids. After her surgery, DD had a big jump in her speech abilities. Chiari affects the flow of spinal fluid, so it causes pain and all sorts of goofy symptoms. Like gluten intolerance, the symptoms vary hugely from person to person. After her surgery, all her pain was gone and she seemed to be neurologically a little bit improved...better balance and speech and stuff like that. The main deal with this child is that her brain is just shaped wrong. Her vision is poor because her optic nerves never developed. The normal brain is sort of egg shaped, but hers is rather rectangular.

So I do have one more question that I'm thinking about. Her antibody test (I don't know which one it was) came back positive. According to my reading that indicates a 95% chance for celiac. We are waiting for the results of her gene test. Do those odds mean that it is possible that she has the anti-gluten (or whatever) antibodies, but does not have celiac? Has anyone here tested + for the antibodies but not had the gene? Even if she doesn't have celiac I'm taking her off gluten.

I am finding this forum so helpful as we prepare to make this change!

[jccgf]

I just wrote a long response, hit enter, and poof! I must have timed out or something.

You may appreciate a shorter answer anyway .

Her antibody test (I don't know which one it was) came back positive. According to my reading that indicates a 95% chance for celiac. We are waiting for the results of her gene test. Do those odds mean that it is possible that she has the anti-gluten (or whatever) antibodies, but does not have celiac? Has anyone here tested + for the antibodies but not had the gene?

This is so complicated to explain, and it does depend a little upon what antibody was positive.

If the anti-tTG antibody was the positive antibody, Celiac Disease is very likely. There are some reports of false positives, but not many. It is also more specific to celiac disease than the the antigliadin antibody is. A positive anti-tTG with one of the main genetic types... both things...is just icing on the cake..and pretty much a sure thing they would find villous atrophy on biopsy. While the vast majority of GI doctors like to confirm celiac disease with a biopsy, some doctors are willing to forego the biopsy when these other diagnostic tests are strong.

It IS possible to have celiac disease without having one the major genetic types (HLA DQ2 or HLA DQ8) though, but this is not common. It does bother me whenever I hear one of the renown celiac experts say you can rule out celiac disease if someone doesn't carry one of the main genes, because they are disregarding that 1-5% who may have celiac disease but not carry a main gene. Even one in a million odds means nothing if you are the one.

I have met two people over the years who had positive anti-tTG, have biopsy proven celiac disease, but had a different genetic type (HLA DQ1)...which is associated with gluten sensitivity, but only rarely with celiac disease. It is possible to have celiac disease without one of the main genetic types.

If the only positive antibody test she had was the anti-gliadin, there is about a 50-85% chance they would find viillous atrophy on biposy (depending upon which study you read). The antigliadin antibody is more sensitive (it may show up first, before the anti-tTG), but is considered less specific (because it is seen in people who don't have celiac disease). If she also has one of the main celiac genes, it might lead them to proceed to a biopsy, because they would see her to be at much higher risk for celiac disease than if she didn't have one the main genetic types. This could be what is going on here.

The antigliadin antibody is associated with gluten sensitivity (not strongly associated with villous atrophy)

The anti-tTG antibody is associated with celiac disease (villous atrophy very likely).


As for genetic testing, 95% of those with celiac disease (villous atophy) will have one of the main celiac genes (usually HLA DQ2, but sometimes HLA DQ8). 30% of the population carry one of these main celiac genes, yet only 1% of the population develop celiac disease.

Estimates of how many people have some degree of gluten sensitivity range from 30-50%.

When we broaden the scope to gluten sensitivity, many other genetic types may enter the picture. For example, in some of the research in regard to gluten ataxia (without celiac disease), they have found up to 20% have HLA DQ1, while the remaining have HLA DQ2/HLA DQ8 as seen in celiac disease.


For more thorough info... you can check out The Gluten File pages on:
Genetic Testing

Limitations of Blood / Biopsy

Antigliadin Antibodies

Gluten Sensitivity vs. Celiac Disease

Even if she doesn't have celiac I'm taking her off gluten.

Good idea, I think!

Hope this helped some, and wasn't just more confusing. There are so many "exceptions" when it comes to the diagnostics of celiac disease, and then the added confusion of celiac disease vs. gluten sensitivity... which is still controversial even among some of our top docs.

Cara

[jccgf]

We are going to go as gluten free in our house as possible...

I just remembered I never came back to comment further on my reasons for keeping a gluten free house.

My youngest daughter was 5 when we discovered her gluten sensitivity based upon isolated antigliadin IgG antibodies. We opted to skip the biopsy in favor of a dietary trial, as we were prepared to try the diet with a "can't hurt/ might help" philosophy whether the biopsy would have been positive or negative. She had many symptoms... GI (chronic diarrhea, gas, stomach ages) neurological (leg drag, limp fatigue, drooping eyelids, and a few other quirky things), skin rashes, irritable mood, increasing general illness. We later found she does not carry the main celiac genes, but has double copies of HLA DQ1.

Within the following six months, we found my older daughter, with history of seizures and much more, was also gluten sensitive based upon isolated antigliadin IgG antibodies. This daughter WANTED a biopsy, so we did it, and the results were negative for celiac disease. Her GI doc said there was no reason for a gluten free diet, and my daughter listened to her . Six years later, I still have hope she may one day go gluten free..and she keeps telling me she will after college.

In any case, the reason I decided to make the entire house gluten free were many.

1) I didn't want my youngest daughter on the diet to feel deprived in her own home. She has to say no to many foods at school, friends and relatives houses, parties, etc.

2) I wanted my daughter to know everything in the house was 'safe' for her to eat so that she didn't have to question it, and there were no mistakes.

3) I didn't want to feed my older daughter gluten, believing/knowing it was harmful for her. I had little control over her choices away from home, but I would not be the one to feed it to her in my home!

4) I decided to go gluten free myself, based on everything I've read about gluten sensitivity, my autoimmune thyroid disease, B12 deficiency, and GI symptom history, and because I couldn't bring myself to eat something that was making my children sick. As it turns out, I've had many positive benefits as well.

5) Cross contamination was a concern, but not my primary concern. It is REALLY NICE, though, not to have to worry crumbs and such while at home!


Luckily, my husband was just fine with this...and still is six years later. He does eat gluten away from home.

I allow gluten in the house only once or twice a year (except I allow my husbands beer). I did order out pizza the day after Thanksgiving for company this year.

There are plenty of snack foods that are gluten free... potato chips, tortilla chips, popcorn, fruit and veggies, etc. An of course, meals can be made from meat, vegetables, fruit, rice and potatoes, eggs, etc. I do make my own bread...one loaf a week. I find this a tedious job, to the point of sometimes getting stingy with it. If my husband misses anything, it is probably free access to bread, but he makes do. I do make gf cookies on occasion, and they turn out fabulous.

As many families can attest, this is very doable, and you may find other family members benefit from the diet as well, not to mention it tends to be a healthier diet for all of us because we are forced to eliminate so much of the "bad food" in our diets. Beware...though... there is no shortage of gf junk food if you want it .

There are different variables (children, ages, etc) in every family... so it really is a personal decision based on the needs of the entire family... whether to keep a gluten free home or not.

Other than the home made gf bread factor, most of our company wouldn't even realize we are a gluten free household...there are just so many gluten free foods available. I do stock up the house with many good gf snacks and foods when my grown children come home to visit..to be sure they don't "notice".

Cara