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Kolla

Ok, A Bit Stupid

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Hi everyone, Im new to this world, my girl recently was diagnosed with celic and Im trying to find things out, I live outside USA and where I come from there are not many special gluten free products. Can you tell me what harm a small amount of gluten does to her, she was diagnosed also with graves disease so I not sure I know what was the gluten and was graves....

What Im trying to say is ofcourse I give her gluten free diet, but if she is in a friends house and eats something she is not suposed to eat what will that do to her ??

thanks so much for reading

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Hi Kolla,

Reactions from gluten can vary from one person to another. I think your girl would have a reaction similar to the problems she was having before she was diagnosed with celiac disease if she eats something harmful at a friend's house. Usually the worse effects occur several hours after eating something with gluten, but that may not always be the case.

Graves disease is a thryoid condition. Most doctors recommend avoiding soy when there is a thyroid disease, and some people who have celiac disease also need to eliminate soy or other proteins from their diet. I hope this helps. Good luck to you ... and your girl. You came to a good place to get information, and I'm sure you will get better advice than I have given.


Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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Well if she eats something with gluten it will flare the antibodies. Some will feel it quickly but some will have a delayed reaction, sometimes by as much as a couple of days. It will bring back her symptoms and after she has been gluten free and healed they may even be worse than before she was diagnosed. That is the bodies way of protecting us so don't be alarmed if that happens. If she is newly diagnosed she may also go through a bit of withdrawl so if she is more moody than usual bear with it.

She is really better off making sure that she always has something safe around whether it is just a couple pieces of fruit or a gluten free snack.

Do make sure to do all you need to keep her safe at home, a new dedicated toaster, strainer for pastas, replace scratched pans and she needs stuff like condiments, pnut butters, jellys etc that are for her use only if you eat gluten in the home.

Also be aware that if you eat or drink gluten you should make sure to brush your teeth before you kiss as that can gluten her also.

Your a great guy to want to help take care of her and welcome to the board. Do read as much as you can and ask any questions you need to. The only stupid questions are the ones you don't ask (something my Mom used to say)


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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If a Celiac continues to eat gluten, the gluten will do permenant damage to the small intestine which in turn could lead to cancer. Everyone is different but I can't see how the abdominal pain is going to get any better not considering the damage that is being done. You really need to think about this.:)


Financialman

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Thank you all, Im not worried about her at home, and not at school, she takes food from home to school, and there is nothing in the house with gluten we all stopped eat gluten at least at home (dont know what my 19 year old does outside the home). But she is only 11 years old and has also asperger syndrome and as I said at the same time the doctors found out about the gluten they also diagnosed her with Graves disease.

It is strange, but where I come from celiac is very rear and there are not many special gluten free products. In my country there are only 24 children diagnosed with celiac by doctor !!!!!!

Im worried if she is in a friends house and would have something, what would happend, Im still learning, trying to find out how to read the labels in the store and so on. About the mood, Im not sure, Im not sure what is what, what is her Asperger, what gluten or what Graves, all has similar symtoms,Children with hyperthyroidism tend to have greater mood swings and disturbances of behavior. The doctors are promising me that after some time she will be better, when the medicines for Graves has worked and no gluten in her diet, in the meantime im okey. Im trying to do my best and Im so sure you all can help me with my girl.

:rolleyes:

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Thank you all, Im not worried about her at home, and not at school, she takes food from home to school, and there is nothing in the house with gluten we all stopped eat gluten at least at home (dont know what my 19 year old does outside the home). But she is only 11 years old and has also asperger syndrome and as I said at the same time the doctors found out about the gluten they also diagnosed her with Graves disease.

It is strange, but where I come from celiac is very rear and there are not many special gluten free products. In my country there are only 24 children diagnosed with celiac by doctor !!!!!!

Im worried if she is in a friends house and would have something, what would happend, Im still learning, trying to find out how to read the labels in the store and so on. About the mood, Im not sure, Im not sure what is what, what is her Asperger, what gluten or what Graves, all has similar symtoms,Children with hyperthyroidism tend to have greater mood swings and disturbances of behavior. The doctors are promising me that after some time she will be better, when the medicines for Graves has worked and no gluten in her diet, in the meantime im okey. Im trying to do my best and Im so sure you all can help me with my girl.

:rolleyes:

It sounds like you are doing everything you should. Glad to hear the house is gluten free. For some reason I thought you were talking about your girlfreind not your child so forgive me if my reply seemed a bit strange. You may see a bit of resolution in some of the Asperger symptoms and since she is an Aspie do avoid dairy in all forms for a while also. Some Autistic spectrum folks react to both gluten and casien, the protein in milk. If you tell us what country your in we may have members there that can be helpful in finding products for you.

I hope things are going better for her soon, there are folks here with thyroid issues who have had some resolution with problems once they have been on the diet for a while and I hope the same occurs for her.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Im from Reykjavik the capital of Iceland so also exscuse my english, the population in Iceland is 330.000 and as I said celiac diagnosed from doctor is very rear, the doctors dont know why, it might has something to do with our food. 24 children is suprisingly few and its also rear in adults. So it kind of makes things complicate, most people dont know what Im talking about when I talk about celiac, and sais well its no proplem to skip wheat you can use spelt ! And its hard to find special products and they are hilarius exspensive if you find them. Thank you all for your advise, I spend most of my free time reading gluten free blogs, this forums and other websides about celiac, tryed to bake a gluten free bread - it was horrible, but made some waffels, very good :D

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Kolla, sorry to hear that their are few people and celiac products in your country. Would it be too expensive to order gluten free products a couple of times a year from health food stores in the Us or Canada?

I have two grandaughters with Celiac.My daughter and I prepare meals and baking. Then we freeze items in individual servings. So when time is short we can take something out and microwave it.It all seems overwhelming at first and gets better with time. If you shop for fresh fruits and veges, plain meat fish and poultry, plain rice and cook from scratch it will be easier. I have several good cookbooks.good luck your not alone!

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Im from Reykjavik the capital of Iceland so also exscuse my english, the population in Iceland is 330.000 and as I said celiac diagnosed from doctor is very rear, the doctors dont know why, it might has something to do with our food. 24 children is suprisingly few and its also rear in adults. So it kind of makes things complicate, most people dont know what Im talking about when I talk about celiac, and sais well its no proplem to skip wheat you can use spelt ! And its hard to find special products and they are hilarius exspensive if you find them. Thank you all for your advise, I spend most of my free time reading gluten free blogs, this forums and other websides about celiac, tryed to bake a gluten free bread - it was horrible, but made some waffels, very good :D

Your English is just fine! :)

From what I understand, celiac is frequently diagnosed in Finland and other Scandinavian countries; perhaps Iceland is starting to catch up. Perhaps it is not that the disease itself is rare, rather that people just aren't diagnosed properly. That is no different than here in the US. Many celiacs go undiagnosed for an average of 11 years because it is NOT the first thing doctors think of when patients complain of multiple symptoms and it is often undetected in testing. Plus, some people don't even have the obvious gastrointestinal problems, so how can they know? The world is slow in understanding how much gluten affects the body. I think that will change in the next few years as awareness of it--and the relationship it has to autoimmune disease ---grows. I believe in Italy, they test babies for it, so early diagnosis can prevent them from a lifetime of ill health. Some countries are way ahead of others!

It is good that your daughter's doctor found the problem!! Soon, she will feel better. Hopefully soon, more gluten-free products will become available for you.

I can imagine how difficult it is when you do not have many available gluten-free products. They are convenient, but most of us find that the best approach is to make most things from scratch because then, you are SURE of what your daughter is eating.

In answer to your question about how even a little can affect her---the answer is ANY gluten is too much. Not everyone reacts in a way that is obvious. That's the hardest part. IF only gluten would light up, we could see it :>) and avoid it.

One thing that really stumped us was making good bread. We tried several recipes, all gooey messes or dry crumbles (yuck) but this one I am going to post below is really good. I guess you may have to convert the measurements to your system.

Gluten Free Bread


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Her problem and mine is that she did not have any symptoms of celiac, she has always been an anxiety child, thats her asperger, she has always been skinny and no stomick problems. She has been pale and has lost weight and been very miserable sincelast summer, the doctors took blod test and found outthat she had Graves disease, and also found out that she could have gluten intolerance.

She was so sick that they could not examine that in hospital for more than month or until her thyorid hormone has got lower, dont know how to say that in english, but do the exam through her stomach, you know... :huh: to be sure it was celiac. It is celiac and a bad one they say.

Yes, the problem is/was that she did not have any symptoms, or she had them mixed with other symtoms becouse of her thyorid or her asperger, its tripple for her, all three has anxiety, swings in mood and other things and she was almost dying from nutritional deficiency, she was eating all the time and all that did was sho lost weight. The body was screaming for nutrition, and the celiac was in the way and the little she got her hypothyorid burned that out. So I realy dont know, if she is sick by gluten or by something else, well its a world I will probably get used to, I just realy feel sorry for my little girl :(

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How severe is her Asperger's, Kolla? I assume that she is able to understand the need to stay gluten free and know where gluten is to be found? If this were the case, she should be able to take food to her friends' houses and know not to eat anything that is offered her there. It is difficult when she does not have specific symptoms that she can link to gluten, a kind of cause and effect relationship. Has she been improving on the gluten free diet and now that they are starting to get her thyroid under control?


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Her problem and mine is that she did not have any symptoms of celiac, she has always been an anxiety child, thats her asperger, she has always been skinny and no stomick problems. She has been pale and has lost weight and been very miserable sincelast summer, the doctors took blod test and found outthat she had Graves disease, and also found out that she could have gluten intolerance.

She was so sick that they could not examine that in hospital for more than month or until her thyorid hormone has got lower, dont know how to say that in english, but do the exam through her stomach, you know... :huh: to be sure it was celiac. It is celiac and a bad one they say.

Yes, the problem is/was that she did not have any symptoms, or she had them mixed with other symtoms becouse of her thyorid or her asperger, its tripple for her, all three has anxiety, swings in mood and other things and she was almost dying from nutritional deficiency, she was eating all the time and all that did was sho lost weight. The body was screaming for nutrition, and the celiac was in the way and the little she got her hypothyorid burned that out. So I realy dont know, if she is sick by gluten or by something else, well its a world I will probably get used to, I just realy feel sorry for my little girl :(

I'm so sorry to hear of her severe problems. I have celiac but I'm old! However, I have just come across an older version of a Celiac diet that seems to help other problems too, and it's not too bad to follow. No gluten, of course, and some other restrictions, but if she (and you) get some relief from worrying and her blood tests get better, the restrictions don't seem to matter, do they? This diet is called the Specific Carbohydrate Diet. I've been reading about it and it seems very helpful. You might find it helpful too. It does NOT rely on substitutions for food (like gluten free cookies made with non-gluten flours) because they can have other things in them that can irritate the intestine.

Good luck and give your girl a hug for me.

Luddie

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There is a whole thread devoted to the Specific Carbohydrate Diet on this forum. If you are interested, this link will lead you to the end of it:


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Her problem and mine is that she did not have any symptoms of celiac, she has always been an anxiety child, thats her asperger, she has always been skinny and no stomick problems. She has been pale and has lost weight and been very miserable sincelast summer, the doctors took blod test and found outthat she had Graves disease, and also found out that she could have gluten intolerance.

She was so sick that they could not examine that in hospital for more than month or until her thyorid hormone has got lower, dont know how to say that in english, but do the exam through her stomach, you know... :huh: to be sure it was celiac. It is celiac and a bad one they say.

Yes, the problem is/was that she did not have any symptoms, or she had them mixed with other symtoms becouse of her thyorid or her asperger, its tripple for her, all three has anxiety, swings in mood and other things and she was almost dying from nutritional deficiency, she was eating all the time and all that did was sho lost weight. The body was screaming for nutrition, and the celiac was in the way and the little she got her hypothyorid burned that out. So I realy dont know, if she is sick by gluten or by something else, well its a world I will probably get used to, I just realy feel sorry for my little girl :(

I was the same exact way - no stomach problems, just losing weight and literally starving myself even though I was eating all the time. When they said it was Celiac I was doubtful, but went on the diet anyway. Within a few months I started gaining weight, my one sure sign that the gluten free diet was doing something right. (My intestines were healing, but I couldn't see that). It will take some time, but her body will start to heal and she will gain weight and her body will absorb all those nutrients it has been lacking for so long.

You have so much to worry about and I am sorry for that. But it sounds like you are the perfect mother for her and are doing whatever you can to help her get better. Good luck to both of you!

Wendi


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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