Please Advice: A Mother Of A Teen With Wheat Allergy/gluten Sensitivity

[Kurzemiete]

[/size) Hi everyone. My soon to be 15 yo daughter and I have wheat issues for sure, probably milk issues too.

She has had extreme stomach aches for years, sweats and agonizing pain. For a few years now, she has had auditory hallucinations, she hears breathing at all hours of day and in all places in our home. As far as I know, she only hears these sounds at our home. I probably should broach the subject with her again, however I hesitate because on top of her health issues (and many of mine) she is dealing with a great deal of family issues with estranged family members.

Fairly recently, she has begun to experiece noticable neurological issues -she has had the brain fog, a dimnished balance and clumsiness.

A few days ago several hours after eating a wheat pita, my daughter had extreme body wide lack of feeling (neuropathy?). She also developed a stiff neck on one side, I provided a compress. The body malaise lasted all day. Although she is a very sensitive person she puts on a tough front, this scared her and unsettled her to the point of tears. All i could do was assure her that many people have that, including mom, and the only real remedy is not to eat wheat. I actively do hnot bring rye or barley into the home.(unless it`s hidden).

She had the Celiac blood work done in Aug of 2010

- her IgA was 0 U/ml.

- her IgG was 2 U/ml.

According the tests she does not have celiac, however I am willing to bet she sure has gluten sensitivity.

Also for example, when i give her gluten free cereal, with lactose free milk, even then she gets stomach upset.

This tells me she has milk issues also.

It`s my understanding that what allery/gluen sensitivity/celiac is often a partner to milk allergy.

Q-I am trying to understand what is the difference between gluetn sensitive and silent celiac?

Q-Do auditory hallucinations occur if a person is wheat allergic or do they strictly affect those with gluten /celiac issues?

Q-Also, what is the difference between milk/milk product allergic and allery to lactose? It seems that the former covers a wider spectrum , ie all forms of milk products.

Thank you in advance for your input!

[Kurzemiete]

I forgot to mention that I am on government disablity, a sole supprt parent .I live in Canada.

And now again the government has revampted the dietary requirement for eligible medical issues.

Naturally, they have shaved off many previous conditions, so its challenging to be able to eat properly on this budget.

I would love to have some arguments to present to my doctor.

[T.H.]

Unfortunately, whoever ordered your daughter's tests isn't very celiac knowledgeable. :-(

A percentage of celiacs have something called IgA deficiency, where they don't produce enough IgA (the fact that her IgA was 0 makes her a good candidate for this). If they have this, they will test negative with the IgA part of the test. As a result, celiac blood tests should always include a test that can determine if she is IgA deficient. There are other tests that have a higher specificity for the disease, as well, that would have helped to figure out better if she might have this disease. False negatives are common, so a few different tests give you the best chance of figuring it out, you know?

Q-I am trying to understand what is the difference between gluetn sensitive and silent celiac?

Right now, it's still under debate. Some doctors don't believe that one can be gluten sensitive. They just think it's the beginning of celiac disease that hasn't caused enough damage to test positively for. However, a recent study did seem to find positive symptoms to gluten without developing celiac antibodies, so it's edging toward these being two different things.

Silent celiac disease is just regular celiac disease that doesn't cause symptoms that doctors recognize as 'traditional' celiac disease, with gut pain and such.

As docs can't even figure out if celiac disease and gluten sensitivity are different, they don't really know HOW they might be different, you know? In celiacs, we eat gluten, it comes into contact with our gut, and our bodies make antibodies that attack our gut, in a nutshell. Then we suffer from nutritional deficiencies over the whole body as a result.

Gluten sensitivity...maybe the body attacks? Maybe it just doesn't digest well and results in issues of that nature. Maybe there are reactions like headaches and other problems that we are uncertain of the cause, only that they happen. No one really knows.

However, something that's very relevant for your daughter. There have been, I think it's 2 studies now?, that have found celiacs who ALSO develop antibodies that attack our nervous system once gluten hits the blood stream. Some people have these antibodies even when they are consuming such low levels of gluten that their guts have healed up. In these cases, I've seen doctors say that you want to get your little one off the gluten, and get off of it now, because some of this damage may not be reversible. And it also makes her in a bad category for a 'gluten trial' because again - the damage may not be reversible.

Unfortunately, as you probably already know, when she's been off gluten for a while, the tests are negative. So if you want these other tests done, you'll have to get them ordered within days of her going gluten free. It puts you between that rock and a hard place, to get your daughter healthy right away vs. trying to get a diagnosis.

Although also on a side note - many celiacs I know who have neurological reactions also seem more sensitive to gluten and gluten cc than the average celiac. Gluten free doesn't actually mean zero gluten (you may already know this) but is usually between 5-20ppm or so. Some of us neuro folks can't have a lot of the processed gluten-free stuff because the range of gluten is higher than we can tolerate without getting symptoms. We tend to go more towards fruits and veggies, whole meats, that sort of thing. And for those of us like that, I have spoken to a couple who HAVE healed what they were told was irreversible damage, but it took years for it to work, and almost no processed gluten-free food.

Q-Do auditory hallucinations occur if a person is wheat allergic or do they strictly affect those with gluten /celiac issues?

I don't know if the allergy would cause it, but I wouldn't discount it. I've seen too much weird, weird stuff the body can put us through with allergies. I would suspect celiac disease, though.

Q-Also, what is the difference between milk/milk product allergic and allery to lactose? It seems that the former covers a wider spectrum , ie all forms of milk products.

An allergy is going to be the body reacting to certain proteins in milk. There are a few proteins that we react to, but usually they just test for all the proteins together, so you don't know exactly which ones you react to with an allergy. At least one of these proteins is typically going to be present in all dairy products to some extent.

Lactose we're not allergic to, but we can lack an enzyme that is needed to digest it (lactase, it's called). The tips of the villi in the intestines are where the lactose is produced, and these are damaged in celiacs, making us often lactose intolerant.

Lactose can actually be consumed by bacteria during fermentation, so truly fermented dairy products can be low in lactose. Modern processing often doesn't ferment the dairy properly but just adds in pectin and starch and gums to 'cheat' on getting a thick consistency. And so the lactose isn't properly consumed in these. Or it will add citric acid instead of letting it ferment until it's sour, like in buttermilk.

[Kurzemiete]

Hi and thank you every so much for your reply and the time it took!

I appreciate that a lot

I apologize that my reply is very short, am fibro tired and new puppy is pretty demanding too

Warmly, L.

Unfortunately, whoever ordered your daughter's tests isn't very celiac knowledgeable. :-(

A percentage of celiacs have something called IgA deficiency, where they don't produce enough IgA (the fact that her IgA was 0 makes her a good candidate for this). If they have this, they will test negative with the IgA part of the test. As a result, celiac blood tests should always include a test that can determine if she is IgA deficient. There are other tests that have a higher specificity for the disease, as well, that would have helped to figure out better if she might have this disease. False negatives are common, so a few different tests give you the best chance of figuring it out, you know?

Q-I am trying to understand what is the difference between gluetn sensitive and silent celiac?

Right now, it's still under debate. Some doctors don't believe that one can be gluten sensitive. They just think it's the beginning of celiac disease that hasn't caused enough damage to test positively for. However, a recent study did seem to find positive symptoms to gluten without developing celiac antibodies, so it's edging toward these being two different things.

Silent celiac disease is just regular celiac disease that doesn't cause symptoms that doctors recognize as 'traditional' celiac disease, with gut pain and such.

As docs can't even figure out if celiac disease and gluten sensitivity are different, they don't really know HOW they might be different, you know? In celiacs, we eat gluten, it comes into contact with our gut, and our bodies make antibodies that attack our gut, in a nutshell. Then we suffer from nutritional deficiencies over the whole body as a result.

Gluten sensitivity...maybe the body attacks? Maybe it just doesn't digest well and results in issues of that nature. Maybe there are reactions like headaches and other problems that we are uncertain of the cause, only that they happen. No one really knows.

However, something that's very relevant for your daughter. There have been, I think it's 2 studies now?, that have found celiacs who ALSO develop antibodies that attack our nervous system once gluten hits the blood stream. Some people have these antibodies even when they are consuming such low levels of gluten that their guts have healed up. In these cases, I've seen doctors say that you want to get your little one off the gluten, and get off of it now, because some of this damage may not be reversible. And it also makes her in a bad category for a 'gluten trial' because again - the damage may not be reversible.

Unfortunately, as you probably already know, when she's been off gluten for a while, the tests are negative. So if you want these other tests done, you'll have to get them ordered within days of her going gluten free. It puts you between that rock and a hard place, to get your daughter healthy right away vs. trying to get a diagnosis.

Although also on a side note - many celiacs I know who have neurological reactions also seem more sensitive to gluten and gluten cc than the average celiac. Gluten free doesn't actually mean zero gluten (you may already know this) but is usually between 5-20ppm or so. Some of us neuro folks can't have a lot of the processed gluten-free stuff because the range of gluten is higher than we can tolerate without getting symptoms. We tend to go more towards fruits and veggies, whole meats, that sort of thing. And for those of us like that, I have spoken to a couple who HAVE healed what they were told was irreversible damage, but it took years for it to work, and almost no processed gluten-free food.

Q-Do auditory hallucinations occur if a person is wheat allergic or do they strictly affect those with gluten /celiac issues?

I don't know if the allergy would cause it, but I wouldn't discount it. I've seen too much weird, weird stuff the body can put us through with allergies. I would suspect celiac disease, though.

Q-Also, what is the difference between milk/milk product allergic and allery to lactose? It seems that the former covers a wider spectrum , ie all forms of milk products.

An allergy is going to be the body reacting to certain proteins in milk. There are a few proteins that we react to, but usually they just test for all the proteins together, so you don't know exactly which ones you react to with an allergy. At least one of these proteins is typically going to be present in all dairy products to some extent.

Lactose we're not allergic to, but we can lack an enzyme that is needed to digest it (lactase, it's called). The tips of the villi in the intestines are where the lactose is produced, and these are damaged in celiacs, making us often lactose intolerant.

Lactose can actually be consumed by bacteria during fermentation, so truly fermented dairy products can be low in lactose. Modern processing often doesn't ferment the dairy properly but just adds in pectin and starch and gums to 'cheat' on getting a thick consistency. And so the lactose isn't properly consumed in these. Or it will add citric acid instead of letting it ferment until it's sour, like in buttermilk.

[Skylark]

In your daughter's case, it sounds to me like the problems are largely neurological. You didn't provide the exact tests for the celiac panel she had. (We need to know what type of IgA and IgG.) As a general rule, the only standard lab test that is sometimes positive for the purely neurological forms of celiac is anti-gliadin.

There is a lot of work on both ataxia and schizophrenia and gluten intolerance. Her clumsiness and balance problems could be gluten ataxia. I mention schizophrenia because of the auditory hallucinations. Your daughter isn't schizophrenic but she might have the hallucination part. People with severe neurological problems have a really different type of autoimmunity but it is still caused by gluten, much like classic celiac. There are no lab tests available, because the research is still in early stages. The treatment is a strict gluten-free diet.

"Silent celiac" is when an asymptomatic person gets tested - often because a family member is celiac - and blood and biopsy come back positive. This is not your daughter's problem.

Gluten intolerance is an innate immune response to gluten, the predecessor to celiac. Gluten intolerant people will not have positive celiac tests but they can still be very sick from eating gluten.

Lactose intolerance is when you are missing the enzyme that digests the milk sugar, called lactose. People who are lactose intolerant can take LactAid or eat lactose free dairy products comfortably. People who are casein intolerant can not eat any dairy at all without getting sick. Both problems are common in celiacs. If your daughter is casein-sensitive, it may be cross-reacting with gluten and causing the autoimmunity.

[Kurzemiete]

Ok thank you for your reply, I appreciate that.

This was her test result -

1)Anti-Tissue Transglutaminase IgA antibody by ELISA = 0 U/mL.

2)Anti-Tissue Transglutaminase IgG antibody by ELISA = 2 U/mL.

Oh wow, when you said Schtzophrenia it really was a very troublesome thing to read for a mom. Of course, this is not the first time I have come accross this connection, however I do believe that it's gluten related.

This is a good article, when I read it, it did give me a bit of piece of mind, in that IF we are vigilant and for a teenager it's not so easy, she will improve.

My only wish is that she (and I too) will improve and one day know a day with no pain or discomfort.

Here is the article.

The Celiac Disease of Mental Illness

(derived in large part from a lecture James V. Croxton, M.A. summer 2002)

Although often referred to as "wheat allergy," Celiac Disease (also called Celiac Sprue) is not an "allergy" but rather an intolerance to the protein in gluten, a substance found in wheat and other grains. For susceptible people, gluten injures the small intestinal lining (called

[Skylark]

That's a great article! The big thing that has changed since 2002 when it was written is that we now understand that the "cerebral allergy" is really autoimmunity. If you can get to a medical library and you're not put off by fairly technical papers, there is a great article called "Gluten sensitivity: from gut to brain." Open Original Shared Link

According to that article, the TTG test your daughter had (they call it TG2) is one of the celiac tests that won't always show anything with the neurological autoimmunity. It was designed to find the "normal", gut form of celiac disease. Your daughter could have a gluten-sensitive stomach and the autoimmunity directed at her nervous system and you'd never see it with standard blood tests.

I know mention of schizophrenia is alarming and I am NOT suggesting that's your daughter's problem. I was just thinking that if gluten could cause all the symptoms of schizophrenia in some people, maybe it gives other people one symptom from it like her auditory hallucinations. It does sound like she has the gluten ataxia as well.

If she were my kid, I would encourage her to eat strictly gluten-free and casein-free and not worry too much about the celiac tests. It would be disappointing not to get an extra food budget, especially on disability, but the diet can be done on the cheap. I had to eat gluten-free in grad school. In fact, I started out gluten-free, casein-free, soy-free so I pretty much had to cook everything. I ate a lot of rice and potatoes and skipped the specialty gluten-free foods. I got fruit and veggies on sale like normal, and ate a lot of peanut butter on rice cakes, eggs, beans, and lentils for protein.

[Juliebove]

Why is she eating wheat if you know it is a problem? And since you both have the problem, I would not be bringing it into the house at all. My daughter is soon to be 13 and there is no way she would eat wheat. She knows the problems it causes for her.

I realize since you are in Canada your food choices might be somewhat different than ours. We can easily get corn tortillas here and that is what my daughter had for dinner. Along with some rice with veggies and chicken in it. We eat a lot of potatoes and rice because they are cheap.