Mama Ruthies

I would say that Celiac is a definite possibility.

Here are some of the things that our son had---

the biggest, speech delays (which we have seen a specialist at Vanderbilt for and he told us our son's delays are because of celiac---how I wish I would have known sooner)

problems sleeping (would wake overnight in discomfort and was up for some time)

unusual BMS---4 to 5 a day, with a consistency none of our other kids had (he would often have a rash so I had to put aquophor on all the time)

terrible allergies---allergic to all 20 items allergist tested him for at 36 months (took him to allergist because of his nasal congestion and clear, runny nose)

iron deficiency anemia (found out about this after finding out about gluten issues)

I do know of another boy who had so many dental problems (and severe speech delays) that the dentist put him under to do the work. The parents had the pedi run all the blood tests to see what was going on---he was very elevated for the celiac panel.

We had our son tested through Enterolab---two celiac genes and elevated antibodies. He's been gluten free for 2.5 years. When he gets glutened, he has BM issues, then brain fog and speech regression for 8 weeks. We try as hard as we can to keep him away from gluten---can't afford to have him going backwards in his speech.

I used to grind my own wheat and add gluten to our bread---yikes! Our son ate it for almost two years before I knew.

Maybe try the diet and see how he does.

We got their ice cream (heavenly!!) which states vanilla---want to make sure it's gluten free. I do have a call into them. Also got their organic salsa and some of their spices. We really don't want to take any chances with our son.

I am thrilled to find another source for gluten free things (and organic items). Unfortunately, the closest Costco is 1.5 hours away, although their is one where we visit family once a month so we'll be stocking up.

Good to know that they are open on their labels.

Thanks!

We have picked up some things from Costco and are thrilled to find Lundberg rice and numerous other organic items there. Are any of you familiar as to the gluten status of Costco's Kirkland brand? I did call their customer service number and was told that they don't have gluten in products unless listed but I'm not so sure how much the guy I spoke with actually knew about gluten.

Do you know if they specifically state gluten free or if things are gluten free unless they state a gluten containing item? Just wondering if any one has any insight.

Thanks!

From our experience with our 5 year old son, I can tell you definitely that gluten can cause speech delays. We just got back from our second visit with a leading doctor in the country for kids with speech delays (who told us the first time we met that our son presents just as other kids he has seen with delays from celiac).

We have seen what happens when our son accidentally gets gluten---his speech will regress for about 8 weeks, and then his pronunciation isn't very good. This has happened three times since he has gone gluten free and it is just heart breaking! He doesn't initiate as much when glutened. We are a gluten free house and have had accidents happen at others homes.

Looking back at when we think our son started to get affected by gluten, we also saw a regression in speech. At first we attributed it to his little sister's birth, but now we know that he was reacting.

An absolutely wonderful resource for working with your son is a book called Play to Talk by Dr. James MacDonald. We also met Dr. Jim and his goal is to empower parents(who has so many opportunities to help our kids communicate throughout the day).

We had our son in Birth to Three (EI) and then worked with the school. We ended up pulling him out of the school and have worked with him at home with a program designed by the doctors we saw. The school was trying to push either an autism or apraxia label (neither of which our son has---he has mixed expressive/receptive delays). Both doctors we met with told us to get out as fast as we could. They have both told us that it is extremely important to get the right diagnosis in order to have the right kind of therapy.

I have "met" through a late talkers group I belong to another woman whose son had speech delays and really bad teeth. They had him put under to work on the teeth and drew blood to run all the tests. He came back off the charts for celiac, and his speech improved once off gluten.

One other thing. We found out last year that our son is anemic. I would check for that as it can also affect learning.

Just wanted to let you know that we have found out firsthand that gluten can affect speech. Feel free to contact me for things that we have found to help---the best thing I can recommend are Dr. Jim's techniques---he is an amazing man! We didn't realize how much we overwhelmed our son until we read Dr. Jim's book---we talked way too much, asked too many questions, didn't wait for our son to communicate (be it verbal or physical), and didn't match him.

Oh, we started to notice a positive change in our son's communication at about six months gluten free. He was 3 1/2 when we pulled him off gluten, but I did make some mistakes the first month or so:)

Hi Tracy,

Our son (a little over 5 and gluten free for almost 2 years) also has speech delays which we now know were caused by gluten. We noticed that first month or so was hard (our allergist also had him off milk, egg, yeast and soy) and our son had loved bread, bagels, yogurt, etc. ---all stuff he all of a sudden couldn't have.

His speech really started to improve around 6 months gluten free. At about 7 months gluten free, he got a piece of gluten pizza and his speech regressed for 8 weeks. We've found out that if he gets some gluten, it takes about 8 weeks and then the speech still isn't as clear as before.

I would suggest having your son's iron level checked. We found out last year our son was anemic.

A great resource for language delays is a book called Play to Talk by Dr. James D. MacDonald. Dr. Jim has many great ways to change how we interact with our kiddos (take turns, "play with words----imagine them being a ping pong ball", matching our kids, reducing questions). We have had such a change since using Dr. Jim's ideas---he really empowers parents. We had our son evaluated by Dr. Jim, and he has such a huge heart for these kids. We also saw another leader in the country for late talking kids who within 20 minutes said that our son presents just as kids with celiac. He said that some day down the road our son will tell us that there was a time when he really hurt. Broke our hearts, but we know it's true. Our son has also struggle with allergies and sleep apnea (we had his adeonoids out in the spring and it made a world of difference).

Hi Kim,

Your daughter sounds so much like our son but we didn't realize he was being affected until much later. He also had rashes, night waking, 4-5 bad diapers a day (not extremely runny), and the biggie for him, speech regression and delays.

We found out through Enterolab when he was not quite 3 1/2 that he had DQ8 and DQ7 and he tested high for everything on the Enterolab tests. We know he needs to be off gluten the rest of his life. He has gotten gluten three times since he was gluten free (plus probably some incidents when we first started out). The first time he got a piece of gluten pizza and his speech was severly affected for 8 weeks. The next two times were a month apart (a year after the first glutening) and again speech slowed WAY down for 8 weeks. He also stopped feeding himself---this came back after about a month. We know he got the gluten by a change in his BMs---not diarhhea but very quick coming---to the point he can barely make it to the bathroom. I cry because I know what we're in for with his speech which we have worked so hard on.

We had had our house gluten free except for wheat bread for our kids that aren't affected. After the second glutening which happened here, we have eliminated all gluten from our house. We had a friend's kids staying with us and somehow he got gluten---we think maybe a sandwich was left out. I want to know that no matter what he gets in our house, he is OK. Accidents happen. It is so freeing to me now to know that I don't have to be aware of any food that might have dropped or been set down somewhere and accidentally left (this happens with adults as well as kids). When we are at other's homes, I feel like I have to keep checking on him and make sure he doesn't get something he shouldn't have.

I so know what you mean about the doctors. Our son was having terrible headaches last year. We saw our pedi and she suggested we get his adenoids looked at. Saw an ENT who put him on antibiotics for a sinus infection (which did help), saw his allergist who said our son needed his adenoids removed (and she doesn't usually advocate surgery", and then the ENT kept pushing for a CAT scan. We refused and said that there were two of our son's other doctors recommending the adenoid removal (our son was suffering from sleep apnea as well as headaches). The ENT did go through with the surgery but it was a hassle to get there. I have learned through our son (and my dad who has had health issues for years) that we need to be our kid's advocate. Our pediatrician is a friend of ours and will tell us if we aren't happy with a doctor to switch---we are paying them for their services. It is so frustrating when all we want to do is help our kiddos!!

Oh, I reread your post and our son didn't show any signs of losing weight, etc. He was always within the healthy range for weight and height. I'm so thankful we found out that gluten is a poison to him when we did---wish it would have been earlier, but so thankful we now know!

I wouldn't go through any more tests. You know gluten is an issue for your daughter and have seen positive responses to the diet.

We use a product called Cal Mag Fizz. It is a powder you put into water and it fizzes (thus the name )

Our 5 year old son reacts to gluten by first having BM issues, then a regression in speech (he already has speech delays), and the last time he got some gluten, he stopped feeding himself (fine motor). He did start feeding himself again after about a month. His speech is usually affected for two months which is very disheartening.

What do you do to help "clean" the gluten out of the system? We have tried to be so careful, but accidents have happened.

Thanks for any advice!!

Sorry you are having to deal with this.

You could get the blood test but as others have said, it has a higher false reading for young kids.

You could get the bioposy, but just so you know, adults intestinal tract when all laid out is as big as a tennis court. A child's would be smaller---my point is you could still miss a spot that shows problems.

This is what we did---we used the Enterolab stool test and cheek swab for gene testing. We didn't want to put our son through another blood draw (had had two bad ones at allergist) for a test we knew we couldn't fully depend on.

Our son came back with DQ8 and DQ7 (gluten sensitivity gene here but celiac gene in Europe). His numbers were also all elevated. It didn't matter one bit to us that some GI doctors don't accept Enterolab results---the gene testing can't be argued, and we have seen the changes going gluten free has had on him.

Our son has speech delays---wish we would have known about gluten's affects on the body much sooner. I used to grind my own wheat and add gluten---yikes!! Now when our son gets gluten by accident, he has BM issues, his speech regresses (which we hate to have happen), and the last time, he stopped feeding himself (he can feed himself with either left or right hand and never spills).

What I would do if I were you---try the diet. You will know if your daughter is gaining weight and will see any changes in speech/motor skills.

I feel for you---it stinks to see our kids have problems.

Some great ideas on here---I need to be much more aware of possible cross contamination when we are out and about.

Our 4 year old reacts to gluten by having bathroom issues for a short time and then a regression in his speech. He already has significant speech delays so it is very disheartening when he does get glutened. We realized he got something about a month ago and are really bummed. We also found out last fall he was anemic and are working to keep his numbers up. We think his numbers might have gone down after the glutening.

Could you share any of the products that you or your kiddos react to---products that are labeled gluten free? I would so appreciate having items to consider. I try to be very careful---it is hard when we are around large family gatherings ---people just don't understand! We are going to start telling them to think of it as poison for our son---any contact would be like giving poison to him. Hopefully that will help.

I will become much more vigilant about having our other four kids wash/wash/wash hands if they have been around gluten. I use antibacterial after visiting stores/parks/etc but should handwash---don't think the antibacterial would eliminate the gluten necessarily.

Hi Aleshia,

Quick background on our 4.5 year old---

His speech started to regress soon after our 2 year old was born, to the point all he said was baby and bye-bye. We had him in Birth to 3 and then decided at 3.5 to put him in the school's speech therapy. We didn't want them to diagnose, just offer services. They tossed around all kinds of labels. We saw one of the leaders in the country for late talkers in May, and he stated that our son is not autistic or apraxic, two things the school kept throwing around. If your son shows love and wants to be around people, I would say he isn't autistic. FYI, this doctor has many states in the country that he doesn't know of a doctor to refer parents to for evaluations---such a high % of the kids are misdiagnosed. He said that to be good at diagnosing you have to be a detective. I can say, a very high percentage of people w/in a school system or even pediatricians are not familiar with celiac and what they do know relates to the digestive system. THe doctor did say that our son's speech issues are consistent with how other patients he's seen with celiac have presented.

Our son didn't show any signs of losing weight, etc. although looking back, we realize he did have lots of messy diapers. He was glutened after being gluten free for 7 months and we saw a big change---amount he talked decreased a lot, his pronounciation was horrible, he was doing some strange behaviors, and could barely get to the bathroom (not loose just came fast) for about a week. It took about 8 weeks for his speech and 'sound" of speech to improve.

Our son is a toe walker, as our two of his siblings and his dad. I have read a ton on late talkers and one thing that is really important is to get the proper diagnosis so that you can get the right therapy. The doctor we saw said that if we would have let the school have their way, our son would most likely have regressed rather than improved.

Regarding the chewing things, I would seriously have some of his vitamin/mineral levels checked. From what I remember reading, a magnesium deficiency can cause kids to chew things (celiac can cause a magnesium deficiency). Have you double checked to make sure he isn't getting gluten somewhere? We had our son on a dairy free diet for a touch, and he was drinking Rice Dream. I found out that even though it states it is gluten free, it does have some gluten in it and many are affected by it. Maybe he has another intolerance----Doris Rapp has a great book called Is This Your Child that gives many great ideas on how food affects us. Also, have you had your son checked for anemia? We found out this fall that our son is anemic, which our pediatrican told us numerous times can cause all kinds of issues.

We supplement with cod liver oil---we know that the gluten our son got affected his brain(very evident when he got glutened over the summer) and omega oils are great to help brain development.

Blessings!

Our son (now 4.5) has been gluten free for 14 months. He definitely has learning issues from gluten. He has delays in his speech, and we saw one of the experts in the country for late talking kids and was told that our son's delays are typical for what this doctor sees with kids with celiac. Our son has improved a lot, but we did have an incident this summer in which he got a piece of "real" pizza. We saw his amount of speaking reduce dramatically, his pronounciation was bad, and a couple of other negative things.

You might want to make sure your child isn't anemic---we found out this fall our son was. Also, have his levels for magnesium, b12, calcium, and zinc checked. We give our son cod liver oil for the omega oils which are necessary for brain development.

I would definitely hold off on any testing. We started to really see a positive change around the 6 month mark. I would give your son's body a chance to heal and a chance for the gluten to get out.

Blessings!

Mama Ruthie,

HI. I have 2 questions. When you said your son had a gluten sensitive gene that is recognized as a celiac gene in Europe, What gene is that?

two, your son's speech delays. How old was he when he said his first sentence? Did he says words? How old is he now?

My son was slow to talk, he did not say a sentence at all till over two. He is 7, in speech therapy and I have to translate for him still for other people who aren't around him much. I understand him though. He has not been tested for celiac.

hope he keeps getting better.

The gene is DQ7. Our son didn't say his first sentence until he was about 3.5. He was saying "I" statements (I go to potty, I go in the car) before he got the "gluten" pizza, but still isn't saying those yet. His longest sentence had been "Mom get the stroller and I get in the stroller" after a long day at the zoo. He hasn't said anything close to that long since the pizza.

I know of another mom who's son is speech delayed and had to be put under to have dental work done. The doctors did the gamut of tests and he is celiac. His speech has improved as his time off gluten has increased.

Blessings!

I haven't read all the responses but want to say that Enterolab was an answer to our prayers for our then 3 year old son. I firmly believe in their results and no one can contest their gene testing. Our son had speech delays and bad allergies. We had him tested at the allergist, and he came back positive to all 20 items. This set off a red flag to me. I read about Enterolab and we decided to do the full panel. His numbers were very high, and he has one celiac gene and one gluten sensitivity gene (the one considered a celiac gene in Europe). We have had him off gluten for a little over a year. After about 5 months off gluten, his speech started to improve. Then he got a piece of "gluten" pizza---bad!! His speech regressed, his pronounciation was horrible. He definitely has problems with gluten.

Our son didn't show any GI symptoms, and we had him evaluated by one of the leaders in the country for late talkers who said without a doubt that our son's speech issues are related to celiac disease.

We didn't do a celiac panel through our doctor for a number of reasons. He had already had two traumatic blood draws, and we had read about all the inaccuracies with young kids with the tests.

Personally, I don't care if he has celiac or gluten intolerance----all I care about is that he NEVER gets any gluten. I was shocked at the tone of some of the responses I read. My feeling and hope is that I can help people become aware of the issues gluten causes---whether it is from celiac or gluten intolerance. It definitely causes people much discomfort and leads to many other issues. So many people are so uninformed and I feel it is great to be able to educate them on celiac/gluten intolerance. Many won't make any changes, but at least I feel I can educate them.

Just wanted to add for anyone wondering about Enterolab's accuracy that I support them fully. I feel it is a great test for kids, and again, no one can contest the gene testing. I also went off gluten and feel much better--no more late evening bloating. I didn't have the celiac panel run on me---just the gene testing through Enterolab. I don't plan on eating gluten again---want to be healthy when our 2 year old gets married!

Our 4 year old son also has speech delays which we know are related to gluten. He's been off gluten since Nov. and his speech started to really make strides in April. In July, he got a piece of "gluten pizza" and he regressed in speech, pronounciation was bad, and initiation slowed way down. He is finally (after over 9 weeks) starting to get back to where he was.

Many feel that taking dairy out at first helps the body heal. We used almond milk as it tastes better and the rice milk we had used (Rice Dream) does contain some gluten even though it says gluten free---Westasoy is OK, or at least was when we were dairy free. Coconut milk is also good, especially in smoothies.

From what I remember for the Is This Your Child book by Doris Rapp, eliminating milk for I believe a four day trial should show positive changes. You might want to check the book.

We had our son evaluated by one of the top doctors in the country for late talkers, and he said that our son presents exactly as the other kids with celiac have. Make sure that your son is getting the right therapy--the school district had hinted at a number of different diagnosis, all which were incorrect and therapy based on that could have caused regression.

Blessings,

Amy

I posted this in the pre-testing forum too (meant to post in post--oops!)

Our 4 year old has celiac, and we will be seeing the allergist this week for his environmental allergies. While they are doing a blood draw, I am hoping to get add'l blood drawn to have our pediatrician run a check on his iron and B12 levels. What else should I have her check? He has been off gluten since November of 2007 with one slip-up in July of this year.

Thanks for any suggestions---want to avoid poking him too many times.

Amy

Our 4 year old has celiac, and we will be seeing the allergist this week for his environmental allergies. While they are doing a blood draw, I am hoping to get add'l blood drawn to have our pediatrician run a check on his iron and B12 levels. What else should I have her check? He has been off gluten since November of 2007 with one slip-up in July of this year.

Thanks for any suggestions---want to avoid poking him too many times.

Amy

My at the time 3.5 year old son's anitgliadin was 105 and tissue transglutaminase was 102. His absorption was normal. We haven't seen a GI because one that is recommended in the area doesn't accept Enterolab's results.

Thanks for your responses! We do have health insurance and could have the blood tests run on the older kids---wouldn't do it on our almost 2 year old. One concern I have with that route is if we get a celiac diagnosis, I don't want the kids to have problems getting insurance (my dad had this issue related to heart problems). Plus even with insurance, with allergy testing we had done, we paid more out of pocket per child than the Enterolab test costs.

gfpaperdoll, thanks so much for the info on the double DQ1----I had read somewhere that is the dreaded combination! Here I thought the DQ1 kids were "better off" than our son with DQ8 and DQ7. I will definitely have my husband read the info on this thread---I want him to be on board that this needs to be a family affair.

Our dentist recently told me that our almost 13 year old daughter has some enamel degenerization----hmmm, I bet from gluten. How thankful I am that we know about the problems with gluten now and can eliminate it!! I wish more doctors and even dentists were familiar with symptoms.

Thanks again everyone!

Amy

Thank you so much for the responses! Texasmama, my concern with just removing the gluten without the test is that none of us have digestive issues---and would I catch changes in neurological ones? I think we will go ahead with the testing through Enterolab.

Thanks again!

Amy

One of my concerns is that after two months, if gluten is a problem, would it definitely be evident? The only difference I have noted being gluten free is that I don't have the bloated feeling I would sometimes get after dinner, although I did lose almost ten pounds so my pants have extra room---maybe that's why I don't feel as bloated! I haven't tried anything with gluten in it yet to see how I feel--if I notice a difference. But with so many people (60%) not having digestive symptoms, would we know for sure if the gluten is bothering us??

It's so hard to decide if and how to spend money. We've spent a lot (all out of pocket) on our 3.5 year old. I'm so on the fence----with the Enterolab testing we would know for sure, even if one of us is gluten intolerant.

Amy

We had our 3.5 year old son tested thru Enterolab and he is off gluten. We had our other four kids and my husband and myself genetic tested thru Enterolab---I have one celiac gene and one gluten sensitivity and have been gluten free since December. My husband has two gluten sensitivity genes, and our other four kids have two DQ1 genes.

I'm trying to figure out what would be the best approach to see if the rest of the family is affected by gluten. If we removed gluten for two months and reintroduced it, would whoever has issues likely show symptoms of some kind? Or is it best to run the gluten sensitivity test thru Enterolab to see who is reacting to the gluten without a doubt. I am trying to watch our money, but also don't want to have our kids or us have medical issues in the future that we could have prevented by getting off gluten sooner.

What would you do?

Thanks for any advice!

Amy

Actually, our son didn't have any digestive symptoms. We had him tested thru Enterolab because he had tested positive to all twenty items the allergist tested him for (10 food/10 environmental). He has speech delays, and we didn't feel he could effectively tell us when food bothered him when we did food elimination trials so we decided to test thru Enterolab. We were shocked at his results!

Now we feel that his speech delays probably are attributed to the gluten. I nursed him until around 16 months and he got some vaccines around 19 months. His younger sister was born when he was 20 months and we noticed his speech regressed after she was born.

We have seen a gradual improvement in his speech since pulling the gluten and family members who don't see him often say they have noticed a big change.

We don't plan on having him have gluten again. Now I need to pull our other four kids (all double DQ1) off gluten and see how they respond.

I wasn't sure if there was anything else the GI would do. I'm very interested in making nutritional changes to help his body---supplements, etc. My guess is a lot of GI doctors don't deal much with that.

One gal from our church said her son's GI tested for enzyme levels. Have you heard of this? He was lacking some enzymes.

Thanks for your responses!

Amy

We had our 3.5 year old son tested through Enterolab in October and he came back elevated in everything with a celiac gene and a gluten sensitivity gene. We've had him gluten free since.

Is there any benefit to seeing a GI doctor? We wouldn't put him back on gluten for additional testing as we trust Enterolabs results. We also wouldn't have him scoped. I'm thinking it would be a better use of our money to have him see a naturopath to help us heal his body.

Does anyone have any things that they have seen as positives to having a GI doc? If the GI doctor wouldn't accept Enterolabs results, we wouldn't think of even paying the co-pay.

Thanks for any advice!

Amy

I posted this earlier on the pre-testing forum but haven't gotten any responses so thought I'd check with all of you.

We had our 3 year old son tested thru Enterolab about two months ago. We've been gluten free since Halloween and have added dairy, egg and soy (with some mishaps here and there with these three).

Can you help me with the results? From my understanding, our son was absorbing nutrients so most likely didn't have damage to villi. But based on his high TTG, would he have leaky gut? Could that also attribute to his high numbers with the other foods?

When I spoke to the nurse at Enterolab, she recommended eliminating the five foods for life! Our allergist has him off dairy and egg for six months---he said soy would be OK twice a week. I have tried to eliminate soy because of his high number for soy.

Thank you to anyone who can give me some additional guidance! Would you remove all five foods? If so, how long? We're having a hard time finding things for him to eat---he's already lost 5 pounds. He didn't show any gastro symptoms---had him tested because had come back positive for everything the allergist tested on RAST.

Here are his results---

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 105 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 102 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 98 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel

Fecal anti-ovalbumin (chicken egg) IgA antibody 28 Units (Normal Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 74 Units (Normal Range <10 Units)

Fecal Anti-Soy IgA 223 Units (Normal Range <10 Units)

------------

The first two weeks off gluten we saw some great strides with our son's speech, but things have been going downhill since. I know withdrawal can take awhile and I feel that maybe he is getting sensitive to other foods as well. We're trying to figure out what is causing his crabbiness---I would say he has a short fuse and isn't using his words as much. Not the same boy we had before we eliminated the foods. Looking back, I think he started having problems with gluten around 17 to 20 months and he's 40 months now.

Thank you for any advice!

Amy