BarbaQ

Hello everyone

My little son is gluten-free.

Can anyone recommend grocery stores who have a lot of gluten-free products, and or some restaurants? We are travelling to Orinda, California, which is apparently close to San Francisco, or Walnut Creek.

Thanks!

Barb

Is it true that clarified butter (Ghee) is casein free?

I have tried to find information on this. Apparently butter is also low in lactose and can be tolerated by some.

Barb

Hello

You may want to consult a dietition about what foods to avoid if you have joint pain. I have read that the nightshade plants (tomatoes, potatoes, ect) cause an increase in problems related to arthritis. Also, omega 6 oils tend to increase inflammation.

Is you doctor planning to do a biopsy? Did they also do the transglutaminase or only anti-gliadin?

Barb

Hi Barb,

98% of celiacs have either DQ2 or DQ8, but there are celiacs with other types. DQ7 and DQ9, for example, have some sequences in common with DQ8.

DQ6 is associated with neurological reactions to gluten (depression, vertigo, ataxia, etc...), plus MS, myasthenia gravis, and juvenile diabetes. Even if your son doesn't have celiac disease, he could still have one or more food intolerances! Gluten and dairy are common culprits. What kind of symptoms is he having?

The only symptoms my son has are:

-severe eczema around the mouth

-his teeth enamel seems a bit yellow

-he is low on the growth chart

-he wakes frequently during the night (he is 2 yrs old)

-frequently constipation. Sometimes he says "Mommy, stomach hurts"

When you say DQ 6, How can I tell what DQ he is? Is he DQ1? or are you referring to 0602?

Thanks

Barb

My son is in the process of getting the "official diagnosis". We live in Canada and have been waiting for about 5 months to see the gastroenterologist. He is still injesting gluten. In the meantime, we did the genetic test through enterolab and the stool sample. He was positive for gluten and casein sensitivity.

We also did ELISA testing via a lab in Toronto called Hemocode. It tested 270 foods for the delayed type of allergies. The results confirmed those of enterolab and showed he cannot tolerate any of the gluten containing flours, all dairy products, peanuts and citrus fruit.

Here are his gene test results.... Can anyone explain what this means? I have read the intrepretation, but still feel like I need further explanation. Or maybe someone can refer me to where this type is explained further. There is a lot of info on the common genes associated with celiac disease, but not so much on....those results below.

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Thanks

Barb

Hello

Try this web site for letters to the principal, teacher, lunch staff. I just copy it into a Word document and make any changes such as other allergies. I also got rid of the acronoms and inserted "gluten".

Open Original Shared Link

If you are bringing food for your child, then maybe also a "treat box" for those times when candy is being given out.

I keep gluten free muffins in the freezor for when birthday cakes are brought in.

We have not yet tackeled the playdough issue yet. My son is not yet 2 and I'm sure he finds things on the floor and they go straight in his mouth. You can worry yourself sick about accidental gluten ingestion. Just do your best to be prepared and teach the staff what is most important. Goodluck.

Barb

Hello

My son is also gluten-free and DF.

As far as cheese goes, try goat cheese. There are various brands, but President's Choice makes a goat mozarella. My son loves it. It has a bit of an after taste, but it is definitely better than soy or rice cheese. The protein is different than the one in cow cheese. I have also found a goat marble cheddar (another brand that escapes me right now) that my son loves. There are some spreadable feta products, very similar to the consistency of cream cheese.

Another fun snack is rice wraps. You can find these in the chinese food section. You simply put them in hot water for a few seconds and then fill them with whatever you want...shredded lettuce, tomoatoes, rice noodles, basil, ...

I push the fruit and veggeis since it is so convienient. we use a goat yogurt as a dip. If your kids are young, they can get used to the taste. For us adults, I can certainly taste the difference in the aftertaste.

If you find an Italian specialty food store, ask for their gluten free products (apparently it is quite common for Italians to have gluten intolerance...who knew?) I have found a wonderful cracker made from potatoe and corn flour. They taste much better than the rice crackers you typically find, also with no diary.

Hope this helps.

Barb

Hello again

My understanding is that testing with iodine causes a DH blister to form. This is done so that doctors can bring on a blister when looking to take a biopsy. If the blister forms, then more than likely, it is DH. Do I have this all wrong?

Maybe I'm jumping the gun. I am assuming that the blood and small intestine biopsy will be negative given my son's young age (22 months) and this being his only symptom. (blisters on the face / eczema). I have read that it is more likely for people with DH to have negative blood and biopsy results.

Thanks. Any advice? Anyone ever try this?

Barb

My 23 month old son recently had a positive gluten stool test from enterolab, however, when we took it to our family doctor, she had never heard of such a test. It seems our medical world does not accept this result and we are waiting for an appointment (5 months) with a gastroenterologist. There seems to be a lot of doubt in the mainstream medical model regarding the accuracy and validity of this test. Unfortunately, this leaves us in limbo.

He has had facial eczema (or possibly DH), for the last 11 to 12 months. This is his only symptom. Really, he is too young to tell us anything. He basically has not slept consistently through the night and we suspect that it may be due to stomach upset. The eczema is only around his mouth. It does not go away even with cortisone. We have been gluten free for about 2 months. The doctor would like us to reintroduce gluten prior to the specialist appointment in January so that the blood work can be accurate. In the meantime, I was wondering if I could just test him myself with iodine? If the test is positive, then I may choose not to reintroduce the gluten, and instead request a skin biopsy.

Has anyone ever tried self testing with iodine? What is the procedure? Is it safe?

Any advice is apprecaited.

Thanks

Barb

Hello

My 1 1/2 year old son has just been diagnosed with gluten intolerance. We are trying to come to terms with what this really means. We knew he had allergies and were in the middle of an exclusion diet when he tested positive for gluten. He is also dairy intolerant, allergic to chick peas, split peas, green peas and lentils.

Can he have rice milk? It states on the container that it has .002% gluten from barley. Any advice?

Thanks

Barb