Early Symptoms

[katerinvon]

Hi Everyone!

I have a daughter 23 months. We introduced bread as a finger food between 9 and 12 months. She had imediate diarhea and bleeding diaper rash. so we quit giving it to her. Her pediatritian said keep her wheat free for 6 months and reintroduce. It's been a year, and every wheat accident results in loose stools and rash, sometimes with ulcers depending upon the amount of the exposure. The clerk at the health food store suggested a gluten intolerance. (She herself is celiac). So dd has been mostly wheat free, gluten free except for those firs few weeks where we were figuring things out. Three weeks ago she went on an I-can-feed-myself binge and got into frozen cookie dough, pretzles, macaroni noodles, flour, sourdough starter over a period of three or four days. Also had beef barley sour (our fault). She had loose, smelly, mucous stools, bleeding rash, poor apitite, lethargy, low grade temp for several days. The ulcers on her bottom still arn't healed. We now have locks on the cupboards and fridge. We saw our pediatrician's partner, asked about celiac desease, he said it was most likely a virus since she has had no other symptoms. He also said the only diagnostic was a scope. We are hesitating about saying yes to this.

Since she has been gluten free most of he life, wouldn't smptoms be minimal and diagnostic tests negative anyway? My mom has rhumatoid arthritis that has not responded to treatment, had asthma as a child, and bad exema most of her adult life. Am I looking at gluten intolerance/celiac disease, or am I being a paranoid mom? She is a healthy kid, and I want her to stay that way.

We live in a small town, med specialists in Las Vegas two hours away. Husband and older sibs very supportive. My older girls are especially good at protecting their baby sister from wheat.

I'd apriciate any thoughts, ideas. Thanks for your time.

Karen

[RiceGuy]

Firstly, thank you for being on top of it so early on. I was never so lucky.

I think you are obviously on to at least part of, if not the whole problem. Symptoms vary wildly, and from what I've read, children of that age won't necessarily show possitive on the tests. I don't have any faith whatsoever in doctors. They only made my situation worse. Much much worse. Even told my parents I was faking to get attention! Whenever a blood test was done, they said virus infection, and prescribed antibiotics, which only made things worse because that kills off good bacteria in the digestive system.

Other food sensitivities can result from gluten intolerence, so watch carefully even when you know everything has been gluten-free. Dairy, Lactose, Casein, soy, sugar, corn, nuts, peanuts, etc. The list is large, but this site and Google will prove to be a wealth of information to you.

A food diary is a good idea.

[Carriefaith]

We saw our pediatrician's partner, asked about celiac desease, he said it was most likely a virus since she has had no other symptoms. He also said the only diagnostic was a scope. We are hesitating about saying yes to this.

I highly doubt that she had a virus, her reactions sounds like a food reaction. If you were to do a scope your daughter would have to eat a lot of gluten for at least 3 months, which may be out of the question if gluten affects her so badley. My guess is that she has celiac disease, a gluten intolerance, or a wheat allergy. To help determine this without putting her on gluten for testing you could do two things,

1. Get a gene test done for celiac disease

2. Have food allergy tests done, these tests are usually not invasive and will tell you if your daughter has an allergy to wheat.

If the allergy test comes back negative for wheat and the gene test comes back positive then you could guess that she has celiac disease. I hope this helps.

[Jnkmnky]

Since she has been gluten free most of he life, wouldn't smptoms be minimal

Why would the symptoms be minimal? Being gluten free for awhile doesn't minimize symptoms. Infact, some will tell you that the reverse is their reality. I would agree. If you're gluten intolerant, being flooded with gluten would be like being hit with a brick.

[katerinvon]

I highly doubt that she had a virus, her reactions sounds like a food reaction. If you were to do a scope your daughter would have to eat a lot of gluten for at least 3 months, which may be out of the question if gluten affects her so badley. My guess is that she has celiac disease, a gluten intolerance, or a wheat allergy. To help determine this without putting her on gluten for testing you could do two things,

1. Get a gene test done for celiac disease

2. Have food allergy tests done, these tests are usually not invasive and will tell you if your daughter has an allergy to wheat.

If the allergy test comes back negative for wheat and the gene test comes back positive then you could guess that she has celiac disease. I hope this helps.

<{POST_SNAPBACK}>

Thanks for the advice. Brigid has her 2 year checkup in January, and I want to be able to have informed questions and requests. No matter what the answer, we will probably treat as we have been, because we know it works.

Karen S.

[Jnkmnky]

You should have your other kids tested for celiac disease. It runs in families. Two of my kids were neg for any and all celiac disease/sensitivities. So was I. We're still all gluten free. Dangerous Grains is an excellent book for the non-medical person.

[Carriefaith]

No matter what the answer, we will probably treat as we have been, because we know it works.

That is probably the best approach. She really does seem to react badly to wheat/gluten. And Jnkmnky is right, most people become more sensitive to gluten over time. My reactions to gluten are way worse then they were before I started the diet.

[katerinvon]

Since she has been gluten free most of he life, wouldn't smptoms be minimal

Why would the symptoms be minimal?  Being gluten free for awhile doesn't minimize symptoms.  Infact, some will tell you that the reverse is their reality.  I would agree.  If you're gluten intolerant, being flooded with gluten would be like being hit with a brick.

<{POST_SNAPBACK}>

I asked about minimal symptoms, because the pediatrician doubted celiac disease because she has had no weight loss. The episodal symptoms are not minimal, but she doesn't seem to have the clasic chronic stuff. And I wouldn't expect the chronic symptoms is she stays on the diet. Am I right, or am I way off base? We are still new to this.

[Jnkmnky]

I asked about minimal symptoms, because the pediatrician doubted celiac disease because she has had no weight loss.  The episodal symptoms are not minimal, but she doesn't seem to have the clasic chronic stuff.  And I wouldn't expect the chronic symptoms is she stays on the diet.  Am I right, or am I way off base?  We are still new to this.

<{POST_SNAPBACK}>

There are 200+ symptoms associated with celiac disease. They present in a myriad of ways. You can even appear to "outgrow" celiac disease. Some used to say the disease was outgrown as a child aged. NOT true. Sometimes celiac disease appears to be cured, but the villi damage persists all the while. Reactions change over time or worsen, or remain the same. The only symptom that doesn't change is the one you can't see...the villi damage. All "confrontations" with gluten in a CDer, result in an immune system response.

Weight loss is not the perfect indicator of celiac disease. Some gain weight. So called "classic symptoms" are only representitive of 10% of celiac disease patients!!!! Time to educate your dr!!

[Carriefaith]

I believe that most doctors only learn about the "classic" symtoms associated with celiac disease in medical school. However, there are literally dozens of symptoms and some people don't even get symptoms at all. In either situation (symptoms or no symptoms), intestinal damage is done. Here are a list of symptoms:

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[Jnkmnky]

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Kinnikinnick has great products all around. Chebe is great, but shipping sucks. Your mom needs to be tested for celiac disease. She sounds like an immune system disaster. The book Dangerous Grains tells how all of these immune system disorders are apparently related. celiac disease is the ONLY immune system disorder that has a known trigger and "cure". Going gluten free (not gluten light) helps those with other immune system disfunctions. Cured my endo! Don't bother trying to get dr approval of this theory... There's no "scientific or medical proof".... they can't sign off on it until there is. No drug companies are spending money looking into a dietary cure. There's no money to be made if dietary changes can effectively cure these autoimmune diseases.

[katerinvon]

There are 200+ symptoms associated with celiac disease.  They present in a myriad of ways.  You can even appear to "outgrow" celiac disease.  Some used to say the disease was outgrown as a child aged.  NOT true.  Sometimes celiac disease appears to be cured, but the villi damage persists all the while.  Reactions change over time or worsen, or remain the same.  The only symptom that doesn't change is the one you can't see...the villi damage.  All "confrontations" with gluten in a CDer, result in an immune system response.

Weight loss is not the perfect indicator of celiac disease.  Some gain weight.  So called "classic symptoms" are only representitive of 10% of celiac disease patients!!!!  Time to educate your dr!!

<{POST_SNAPBACK}>

This is what I am worried about. I've come across a lot of this kind of info in my research the last couple of weeks. It seems we were lucky a year ago in finding the right answer in our ignorance.

My husband and I talked it over after looking at the information we found (only the tip of the iceburg, I'm sure) and resolved to keep the diet, even without a diagnosis. As I said before, it works. I would rather give her the diet and be wrong than give up the diet and be wrong, if that makes any sense.

As for her Dr, we'll see. As a nurse, it has been my experiance that not all medical professionals (including nurses) are willing to look outside of the box.

Thanks again,

Karen S.

[Carriefaith]

As I said before, it works. I would rather give her the diet and be wrong than give up the diet and be wrong, if that makes any sense.

That makes total sense and I think you've made the right decision.

[katerinvon]

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Kinnikinnick has great products all around.  Chebe is great, but shipping sucks.    Your mom needs to be tested for celiac disease.  She sounds like an immune system disaster.  The book Dangerous Grains tells how all of these immune system disorders are apparently related.  celiac disease is the ONLY immune system disorder that has a known trigger and "cure".  Going gluten free (not gluten light) helps those with other immune system disfunctions.  Cured my endo!  Don't bother trying to get dr approval of this theory... There's no "scientific or medical proof"....  they can't sign off on it until there is.  No drug companies are spending money looking into a dietary cure.  There's no money to be made if dietary changes can effectively cure these autoimmune diseases.

<{POST_SNAPBACK}>

Again, Mom hasn't been tested for celiac disease because she has no gastro symptoms. Arrrrrrgh! I told her about what I had found, and she is trying the diet. States she has seen no change in one week, but will keep it up for a while. She asked her rhoumatologist, and he said it couldn't hurt. She is reading Dangerous Grains. I thought I'd look for it in our library.

Interestingly, Mom's rhoumatoid factors come back negative, but she has "clasic" symptoms. Hmmm.

Karen

[Jnkmnky]

Again, Mom hasn't been tested for celiac disease because she has no gastro symptoms.  Arrrrrrgh!  I told her about what I had found, and she is trying the diet.  States she has seen no change in one week, but will keep it up  for a while.  She asked her rhoumatologist, and he said it couldn't hurt.  She is reading Dangerous Grains.  I thought I'd look for it in our library.

Interestingly, Mom's rhoumatoid factors come back negative, but she has "clasic" symptoms.  Hmmm.

Karen

<{POST_SNAPBACK}>

Scary.... is "mom" taking anything with Benzodiazapine???? I took xanax for a single panic attack. Took the benzo for 14 days and had excruciating joint pain for 4 months. No rheumatoid factors either. No joint swelling, nothing to indicate RA, but horrifying pain. Long term allergic reaction to the benzo. Not proven, but clearly the culprit...I took three of the xanax I had left over a year later... had 3 months of mind-blowing joint pain. That's when the drs and I put two and two together!

I would like to add that Vioxx, Tramadol, Arthrotec, and some others did NOTHING for my pain.... (probably because it wasn't RA).... the only thing that took my pain down a notch was Vicodin. Of course, the first drs I saw didn't like the sound of that, so I suffered much while they tried to save me from my perceived Vicodin addiction (side-note for assurances.. I'm not a vicodin addict! )

[katerinvon]

Scary.... is "mom" taking anything with Benzodiazapine????  I took xanax for a single panic attack.  Took the benzo for 14 days and had excruciating joint pain for 4 months.  No rheumatoid factors either.  No joint swelling, nothing to indicate RA, but horrifying pain.  Long term allergic reaction to the benzo.  Not proven, but clearly the culprit...I took three of the xanax I had left over a year later...  had 3 months of mind-blowing joint pain.  That's when the drs and I put two and two together!

<{POST_SNAPBACK}>

I'm not sure which meds Mom is on. But I do know my sister was on seizure medications for ten years. Come to find out that the culprit was artificial sweetners. She has been seizure free, med free and sweetner free for a while now. Scarey is right!

[katerinvon]

Scary.... is "mom" taking anything with Benzodiazapine????  I took xanax for a single panic attack.  Took the benzo for 14 days and had excruciating joint pain for 4 months.  No rheumatoid factors either.  No joint swelling, nothing to indicate RA, but horrifying pain.  Long term allergic reaction to the benzo.  Not proven, but clearly the culprit...I took three of the xanax I had left over a year later...  had 3 months of mind-blowing joint pain.  That's when the drs and I put two and two together!

I would like to add that Vioxx, Tramadol, Arthrotec, and some others did NOTHING for my pain....  (probably because it wasn't RA).... the only thing that took my pain down a notch was Vicodin.  Of course, the first drs I saw didn't like the sound of that, so I suffered much while they tried to save me from my perceived Vicodin addiction      (side-note for assurances.. I'm not a vicodin addict! )

<{POST_SNAPBACK}>

These are the types of things I don't want Brigid to have to go through. But when your a parent of a kid with an undiagnosed problem, most people around you seem to go into denial. Then you are labled as paranoid or interfering or worse. Some of you (probably most of you) may have experianced this.

[RiceGuy]

I know from my own experience that you can't just try a gluten-free diet for a week or two. I didn't see any changes for about six months!

Slowly, it has begun to make a difference. It's been several months, maybe a year since my last piece of wheat bread. I had been off most wheat products for nearly two years, but since yeast has long proven a culprit, the bread was a non-yeast sourdough type. I had hoped so much to not have to give it up. I thought maybe I could just have a slice now and then, and maybe by some miracle my system would "addapt" or something. After all, I had been eating wheat my entire life up to then, so how bad could it be? That was incorrect thinking to say the least!

Once off the stuff, and things begin to clear up, you can more easily notice when symptoms arise. Like pouring a glass of water into a swimming pool - you ain't gonna notice. But, pour a glass of water into a soup bowl, and it's plain to see. That's what I think is happening when a person goes gluten-free. Of course, other symptoms and problems can then become unmasked. They aren't overshadowed by the big issues, so you begin noticing those things.

And yes, people around you probably won't accept it. Nobody in my life supported me in the very least. All against me, and for the most part still are. I don't expect much change there, but I long since stopped concerning myself with that. I am not saying it will get easier, because it hasn't, but in my case they seem to realize my commitment now.

[katerinvon]

I know from my own experience that you can't just try a gluten-free diet for a week or two. I didn't see any changes for about six months!

Slowly, it has begun to make a difference. It's been several months, maybe a year since my last piece of wheat bread. I had been off most wheat products for nearly two years, but since yeast has long proven a culprit, the bread was a non-yeast sourdough type. I had hoped so much to not have to give it up. I thought maybe I could just have a slice now and then, and maybe by some miracle my system would "addapt" or something. After all, I had been eating wheat my entire life up to then, so how bad could it be? That was incorrect thinking to say the least!

Once off the stuff, and things begin to clear up, you can more easily notice when symptoms arise. Like pouring a glass of water into a swimming pool - you ain't gonna notice. But, pour a glass of water into a soup bowl, and it's plain to see. That's what I think is happening when a person goes gluten-free. Of course, other symptoms and problems can then become unmasked. They aren't overshadowed by the big issues, so you begin noticing those things.

And yes, people around you probably won't accept it. Nobody in my life supported me in the very least. All against me, and for the most part still are. I don't expect much change there, but I long since stopped concerning myself with that. I am not saying it will get easier, because it hasn't, but in my case they seem to realize my commitment now.

<{POST_SNAPBACK}>

I was a bit frustrated with Mom"s response. I'm partly afraid that she is only trying this to humor me, especially since her Dr doesn't seem to think celiac disease could be an issue with her. I hope she sticks with it. My gut instinct is that it will help.

We haven't seen dramatic changes with my daughter Brigid either, but it looks like we stumbled onto the right thing early enough to avoid major damage (I hope!). I just worry about progressive dammage from the inevitable accidents.

Support makes things easier. So far, my husband and two older kids are behind me all the way. Having the graphic example of the severe diaper rash has convinced even my eight-year-old. But we also don't have a lot of outside complications. We are a homeschooling family, so no cafeterias or daycares to worry about. We don't have family nearby to interact with, and our friends arn't the dinner party types. We have a tiny ranch with dairy goats, so we rarely travel. People will feed cats and dogs, but not many will milk goats twice a day. Our main social group is through church, and the pastor's wife buys and keeps special treats just for Brigid so she won't feel left out. It helps that their are two other families with kids with food issues in our little group, so we have good support there.

I wish you the best in finding your own support circle. It can be really lonely when you have to tackle a big problem alone. (I've learned this the hard way with another issue in my past.) Maybe here you can find some needed positive reenforcement. Good luck, and keep coming back!

Karen

[RiceGuy]

I wish you the best in finding your own support circle.  It can be really lonely when you have to tackle a big problem alone.  (I've learned this the hard way with another issue in my past.)  Maybe here you can find some needed positive reenforcement.  Good luck, and keep coming back!

Thank you very much! I think both of us have found a good thing with this forum.

It's amazing how family/relatives can turn against you, but over the Internet total strangers can help each other.

[Mom to Levi and Mercy]

[Our son had some of the same symptons that your daughter has and an aunt suspected that he had celiac disease. We had already talked to our pediatrician who blew off his symptons. To make a long story short we did a stool sample test with Dr. Fine (finerheath.com or enterolab.com)out of Dallas Texas to test for the celiac disease and gene test. At the time he also gave us a free dairy/casein test. It was very reasonable, our insurance reimbursed us, it was non-invasive and we didn't have to travel anywhere. He himself has celiac disease and does some testing that is done in Europe but not here yet. It seems that half of the people that I have met with celiac disease have been diagnosed with him. We then took the results to our family doctor and implemeted the diet right away. We were impressed with the results as was our doctor. After a while we realized that he was still reacting to some food in his diet so we did a blood test with York labs in Florida to test for food intolerances. We then found that he had other problems with egg whites, mustard and almond. I would really encourage you to look into this testing. I have read in various places that children often do strange, out of character things to satisfy their cravings for foods that their bodies can not handle. My son could not put enough mustard on his food or eat enough bread! Some thing to think about. I wish you well and hope that Dr. Fine's web site can be of some help to you. Our family would highly recommend it.