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Really Sad... Testing Update


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#1 jayhawkmom

 
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Posted 11 September 2008 - 07:29 AM

My 3 year old has been tested, every year, for Celiac since it runs in our family. His pediatrician is wonderful and is keeping a good eye on him.

The test results came back, and again... they are negative as can be for Celiac. However, RAST allergy testing shows that he's allergic to WBRO. Unreal.

He's also allergic to peanuts, eggs, dairy, and soy.... we already knew that. His numbers are rising, however, instead of the opposite. It turns out he's also allergic to corn and tomatoes.

He's had eczema trouble for a while now, and even with use of RX steriod lotions and creams.. it doesn't go away. That's probably because he was eating wheat/corn... etc.

I'm so devastated. I really really hate food allergies.
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Jayhawkmom -
Mom of three....
Jay - 11
Bean - 8
Ian - 3

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#2 MyMississippi

 
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Posted 11 September 2008 - 10:02 AM

I hear ya ! ! :angry:

There's got to be a REASON why we have food allergies----- I hope someone finds the "missing link" soon ! !

Why are our immune systems so CONFUSED ????
  • 0
CeeCee

Allergic to: wheat, peanuts and Penicillin
1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006


"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

#3 Gemini

 
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Posted 11 September 2008 - 10:32 AM

My 3 year old has been tested, every year, for Celiac since it runs in our family. His pediatrician is wonderful and is keeping a good eye on him.

The test results came back, and again... they are negative as can be for Celiac. However, RAST allergy testing shows that he's allergic to WBRO. Unreal.

He's also allergic to peanuts, eggs, dairy, and soy.... we already knew that. His numbers are rising, however, instead of the opposite. It turns out he's also allergic to corn and tomatoes.

He's had eczema trouble for a while now, and even with use of RX steriod lotions and creams.. it doesn't go away. That's probably because he was eating wheat/corn... etc.

I'm so devastated. I really really hate food allergies.



jayhawkmom....I remember you from another forum that had some not so nice members and we have e-mailed privately. I remember when your son was born and I am so very sorry you are going through this. It's one thing to have these problems in an adult but to try and diagnose in a small child must be sheer torture! What on earth does this kid eat , with so many food issues? I am also wondering if he still does have celiac disease but is not old enough to have enough damage done to trigger the tests? I also know that allergies can go away as they get older and many people can end up tolerating what they couldn't have as a child....except maybe the peanut allergy.

There could also be the possibility that he has so many issues because the underlying cause could really be celiac disease...which in turn is messing his little body up so he cannot tolerate all these other foods. I am also wondering if his skin problems could be biopsied to see if he really has DH or if it's truly eczema? My father, who I suspect has full blown celiac disease also, has a rash that literally covers both his arms. The doctors keep telling him that he has eczema so, of course, nothing is done about it and it has never healed, regardless of all the meds he has been given. Even with a diagnosed Celiac daughter, the doctors just are missing the boat.

How is your daughter, by the way? I remember it was growth issues with her and the last I knew, she was getting pretty good with her diet! Good luck to you and I hope your son improves and outgrows some of these allergies.
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#4 missy'smom

 
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Posted 11 September 2008 - 10:59 AM

If you've seen my posts about my son then sorry for the repeat but..

He tested neg. on celiac disease panel and both blood and skin allergy testing showed mild to moderate wheat allergy, and a few others. He's had eczema(not DH) for years and it used to cover his whole back of his calves. Interestingly, when I went gluten-free two years ago and decreased the amount of gluten served at home, it got much better, but didn't go away completely. We did an official gluten-free trial for a little over a month and by the end, it had gone away completely and stayed gone. When we reintroduced gluten and went back to the usual lower gluten diet, it eventually came back. It's clear to me that there is a connection. I'm still not convinced that this is just allergies. Unfortunately, with neg. test and far from typical symptoms, and being a kid and a seemingly happy, healthy one, no doc is going to go looking for a gluten connection in his case. I think Dr. Rodney something or other, a celiac disease Doc. from Australia wrote something about the gluten, eczema connection not long ago but I haven't gotten a copy to read yet. Without any diagnosis, and even appathy from allergists about changing his diet, I hesitate to take him completely gluten-free for social reasons, so I send gluten-free lunches to school and make all his meals and snacks gluten-free and home and let him have the reg. cake at birthday parties and order from the reg menu, the very few times that we eat out.
  • 0
Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#5 mymagicalchild

 
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Posted 11 September 2008 - 11:48 AM

I hear ya ! ! :angry:

There's got to be a REASON why we have food allergies----- I hope someone finds the "missing link" soon ! !

Why are our immune systems so CONFUSED ????


The only explanation I've uncovered that makes any sense to me is the the Eat Right 4 Your Blood Type research. The concepts in this book are general knowledge in Europe. And eating the foods that do not cause the "agglutination" process to occur with your blood type are adhered to there by a growing number of Europeans.

If you say you are "allergic to beans," as an example, you may be allergic to a number of bean-types but not allergic to others.

All you need to research it is a copy of the book and your blood type.
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#6 ShayFL

 
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Posted 11 September 2008 - 12:13 PM

A caution on Eat Right 4 Your Type. I am A+ and supposed to eat tons of SOY, most beans and whole grain including wheat. I tried that diet and got sicker and sicker. I do not tolerate beans or grains. And soy gives me vertigo. No thanks!

I do much better eating a natural whole foods diet excluding many of the things D'Adamo would have me eating.

So if you try it, do so cautiously. It doesnt work for everyone.
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#7 ravenwoodglass

 
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Posted 11 September 2008 - 12:27 PM

I fully understand your reluctance to put him on the gluten-free diet without a doctor saying officially that he has it. However, and this is a REALLY BIG however, in children under the age of 4 blood testing for celiac has an even higher rate of false negatives than it does with adults. That is why countries that routinely screen asymptomatic folks retest children again at puberty. And in adults the NIH estimates that 30% of us are a false negative on blood testing. Also when the immune system gets activated with celiac it goes into hyperdrive. I was a excellent example of that myself. When I was given allergy testing, skin prick kind, I showed allergic to 98 out of the 99 substances they tested me for. My allergist later said that was the real clue to him that I might have celiac disease despite the fact that repeated blood tests came back negative. He immediately put me on a strict elimination diet that he determined the starting foods for. I was diagnosed finally 6 weeks later when wheat was added back in. You may want to reconsider the 'almost gluten free' statis of your little one and try the diet strictly for about 6 months. You may be pleasantly surprised at the difference.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 Amyleigh0007

 
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Posted 11 September 2008 - 05:02 PM

My son was tested around age 3 for Celiac and was negative. He was tested again at age 8 and his numbers were off the chart (his doctor was shocked at how high) and as you can see from my signature, he has many food allergies. I believe he had these problems (or at least Celiac) when he was 3 but the test was a false negative because he was so young and the disease was just beginning. I wish I had Celiac knowledge back then. I would have taken him off of gluten as soon as the doctor even suggested Celiac (I had no clue what it was and didn't do any research when the test came back negative). My son was very sick for many years even though he was a seemingly happy, very smart child. If you are putting in the effort for "gluten light" I would put in just a tiny bit more effort and go gluten free. Sometimes you don't know what's brewing in their small bodies until it's too late.
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Amy

1989: I am diagnosed with IBS.
3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.
6/08: My Celiac test is negative.
7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!
7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.
8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

#9 MyMississippi

 
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Posted 11 September 2008 - 07:38 PM

The only explanation I've uncovered that makes any sense to me is the the Eat Right 4 Your Blood Type research. The concepts in this book are general knowledge in Europe. And eating the foods that do not cause the "agglutination" process to occur with your blood type are adhered to there by a growing number of Europeans.

If you say you are "allergic to beans," as an example, you may be allergic to a number of bean-types but not allergic to others.

All you need to research it is a copy of the book and your blood type.



I read that book years ago----- I am O- and should avoid wheat--- that part was right --- :D
But I don't follow that diet-------- I have enough diet restrictions without adding more stuff to AVOID---- :)
  • 0
CeeCee

Allergic to: wheat, peanuts and Penicillin
1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006


"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

#10 April in KC

 
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Posted 11 September 2008 - 08:07 PM

(((((HUGS)))))

I'm so sorry. I hate food allergies, too. DS has MFA (multiple food allergies), too. He is scheduled for a new round of tests next month, and I am dreading the possibility of learning new allergies.

"allergic to WBRO" - I took that to mean wheat, barley, rye and oats...so for other posters encouraging a gluten-free diet, it sounds like it's going to happen.

I am SOOO sorry. With all the IGE allergies, are there any GI problems suggestive of eosinophilic disorders, too? Our families seem to have some things in common...I need to make a real sig here so it's all out there.

On the bright side, if there is one...once you research what he can eat, hopefully his eczema will get better.

I would offer you tips from our DS's diet, which is similar, but he's not allergic to egg and I think it's in many of the mixes we use.

Send me a message if you'd ever like to talk. I take from your screen name that we probably live within driving distance. Not that anyone with MFA kids ever has time to do anything but prep, chop, measure, cook and clean, lol.

April
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#11 missy'smom

 
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Posted 12 September 2008 - 05:54 AM

Amyleigh and ravenwood, Were you refering to my post? My son is 10 and starting middle school next year. With me being the only one in his world that believes that he might need to be gluten-free, I don't know how I could keep him gluten-free. It's frustating. How do I look him in the face and tell him that he can't have the cake and pizza at a party or can't order from the menu ? He is not on his own much but still, at his age, we are not always there to supervise. I don't want to set up a situation where he will secretly cheat and undermine our relationship and trust. We'll have enough of those challenges in other areas(hopefully not :) too much, but some comes naturally in time)So I do what I do now and try to build some awareness, until a better solution presents itself.

ravenwood, my son also reacted strongly to all but one of the 40 some allergens he was tested for. I asked how many kids they saw with that type of results and he said out of over a thousand in a year, maybe 10.

I know a couple of other local moms with celiac disease and kids quite a bit older than my son and with very similar subtle symptoms, one in Highschool now is just starting to notice and articulate that he feels spacy when he ingests gluten.
  • 0
Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#12 ravenwoodglass

 
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Posted 12 September 2008 - 06:26 AM

Amyleigh and ravenwood, Were you refering to my post? My son is 10 and starting middle school next year. With me being the only one in his world that believes that he might need to be gluten-free, I don't know how I could keep him gluten-free. It's frustating. How do I look him in the face and tell him that he can't have the cake and pizza at a party or can't order from the menu ? He is not on his own much but still, at his age, we are not always there to supervise. I don't want to set up a situation where he will secretly cheat and undermine our relationship and trust. We'll have enough of those challenges in other areas(hopefully not :) too much, but some comes naturally in time)So I do what I do now and try to build some awareness, until a better solution presents itself.

ravenwood, my son also reacted strongly to all but one of the 40 some allergens he was tested for. I asked how many kids they saw with that type of results and he said out of over a thousand in a year, maybe 10.

I know a couple of other local moms with celiac disease and kids quite a bit older than my son and with very similar subtle symptoms, one in Highschool now is just starting to notice and articulate that he feels spacy when he ingests gluten.


Yes I am sorry that I didn't make that clear. I noticed that you have been gluten-free for 2 years. Do you have a 'formal' diagnosis or a doctor who recognizes the improvement in your health gluten free? With celiac being so strongly genetic that might be enough to get a doctor to agree that a trial of the diet is in order. That would get someone on your side, so to speak.
You might also want to consider something like enterolab testing for intolerances and also a gene panel. Celiac is often associated with different skin conditions and the differing forms of the presentation can sometimes be seen when you look at the genes. My gene DQ9 for example is associated with excema, also a rare form of adult onset Type 1 diabetes and in the US it is considered a gene for RA. DQ1's seem to have more neuro and mood issues etc.
Do check out the home page and the article about the testing for the Ttg6. It is finally being recognized that celiac is a whole body disorder that effects the more than just the gut and that not all of us have GI problems as a primary presentation. Some of us have no GI issues for years or at all. My first symptoms beginning at age 4 were neurological and skin (DH) and the tummy stuff was very minor until I hit my 30's.
As far as broaching the issue with him. Just discuss it with him. Get his input and tell him your concerns. Tell him that you think the strict diet may be something that he would benefit from. And tell him why. Ask him what he thinks and feels on the subject. Brainstorm some possible times when being gluten free might be inconvient and how he might handle the situation. Let him come to the board and check out the teen thread perhaps and see how others deal with it. He may be more willing to do it than you think. But when all the egg's are in the basket you are correct that he will be the one who has to carry it. Young people have to make choices all the time and all we can do is give them the info they need to make a good one.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 mcs1984

 
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Posted 12 September 2008 - 06:28 PM

Its funny that you wont this because our son was tested right after his 4 birthday and everything back neg. But we told the doctor after doing my own seaching that i wanted to try gluten-free anyways and she said ok. I ask about it maybe being false and she said it was very slim and guess up he is gluten-free and doing so much better. I still believe he has celiacs and there is no way i am putting him back on it to be tested again.

My son was tested around age 3 for Celiac and was negative. He was tested again at age 8 and his numbers were off the chart (his doctor was shocked at how high) and as you can see from my signature, he has many food allergies. I believe he had these problems (or at least Celiac) when he was 3 but the test was a false negative because he was so young and the disease was just beginning. I wish I had Celiac knowledge back then. I would have taken him off of gluten as soon as the doctor even suggested Celiac (I had no clue what it was and didn't do any research when the test came back negative). My son was very sick for many years even though he was a seemingly happy, very smart child. If you are putting in the effort for "gluten light" I would put in just a tiny bit more effort and go gluten free. Sometimes you don't know what's brewing in their small bodies until it's too late.


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#14 Amyleigh0007

 
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Posted 16 September 2008 - 06:43 PM

Its funny that you wont this because our son was tested right after his 4 birthday and everything back neg. But we told the doctor after doing my own seaching that i wanted to try gluten-free anyways and she said ok. I ask about it maybe being false and she said it was very slim and guess up he is gluten-free and doing so much better. I still believe he has celiacs and there is no way i am putting him back on it to be tested again.


I totally agree! I wouldn't either! If he is doing well on the gluten free diet then you have your answer. I wish I would have done that back when my son was first tested.
  • 0
Amy

1989: I am diagnosed with IBS.
3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.
6/08: My Celiac test is negative.
7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!
7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.
8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.




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