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I'm Really Sad Tonight But .. Better Than 30 Years Itchy


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#1 Di2011

 
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Posted 07 December 2011 - 03:05 AM

I am sitting here tonight wishing my son would sleep . Hard enough that my DH is explosive at the moment but how hard can it be for a mum to have my boy home from school with the typical "allergy" rash around his mouth?? There has been many "mosquito bites" that I have thought were DH but I think the gluten lite diet is showing its effect. I am sad. Just sad and wanted so much that it wasn't going to present for him.

We had a frank talk about it tonight but I know it will be hard for him. My mum (grandma) is so anti-gluten being the problem ("just a bit of wheat allergy" "just Mum getting wheat out of her system") and she is a big part of our life and survival (literally) right now. I think my heart and care system has taken enough of a bruising and not sure what to do. He is such a kind hearted soul that I can talk frankly to him but my heart is breaking. I told him he may be lucky he won't spend a lifetime like my 30 years itching and other problems but he is so introspective and I can see he wishes that I hadn't.
So annoyed that I've read and read and taken in the "allergy" is different from "intolerance" rubbish etc etc. Just for tonight at least I think it is a load of #$*&%*#&$. How can Liam have "allergy" signs aroung his mouth, probable (its been building for months) itch looking more like DH? Just recently suspected a natural avoidance to "gluten" meals/ingredients and for a while now school lunches shouldn't be sandwiches.
Sorry all.. just another of my single parent, late night alone DH nightmare rants/outlets.
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#2 Ellie84

 
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Posted 07 December 2011 - 03:14 AM

Maybe a diagnosis will help? Go to a doctor and get him diagnosed. That should stop remarks from your family as well. A medical treatment is often more acceptable to people than a "voluntary" choice.
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27, F, from the beautiful area of Twente in the Netherlands. English is not my first language, so I apologize for any errors.

Symptoms started in 2007, but no link to celiac disease was found until 2009. I learned of celiac disease through the internet, my doctor never recognized it. She put me on a diet before tests were done, so the initial tests failed. My GI advised me to do a gluten provocation, which had to be stopped too soon to take a reliable biopsy. Based on symptoms such as vitamin deficiencies, GI problems and osteopenia my diagnosis now is: glutenintolerant, suspected celiac disease. This diagnosis was in march 2010, and I've been so much better ever since.

#3 Di2011

 
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Posted 07 December 2011 - 03:46 AM

Thanks Ellie
I know "diagnosis" would help but my own experience with our local docs mean that it would be a complete waste of time, finances and diagnosis (do they actually have a clue?) is way beyond my means at the moment. As much as it breaks my heart.

Financially better to go gluten free..??.. I hate it but he is starting to consider it. So the only problem is if I was 9 years old and had a problem would I want to know? If I was independent would I want to know/understand/have coping tricks
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#4 itchy

 
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Posted 11 December 2011 - 05:55 AM

Best wishes diandliam.

It's hard when you don't have the support of the people around you.

'Gluten lite' is better than no limits at all, but in my experience it's the last bit of gluten out of the diet that makes all the difference.
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#5 Roda

 
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Posted 11 December 2011 - 03:21 PM

My 10 year old has had all the blood tests several times over the past three years. All negative and had a negative scope/biopsy in Aug. I toyed with the idea of putting him gluten free for two years but couldn't do it in light of all the negative testing. The end of August he went gluten free. It's been almost 3.5 months. I agreed to let him try gluten filled food right after Christmas as a sort of "gluten challenge" to see how he would react if at all. He made the comment the other day that he wasn't sure he wanted to do it and that gluten free wan't really that bad. He has always been the type of kid that doesn't get upset about things as easy as some. If he does or doesn't want to do something he isn't persuaded by others, but makes up his own mind.(I've decided this could be both good and bad :P )I told him that it was his decision. So he said he wanted to wait till after Christmas so he wouldn't be sick if it came to that.

He has had many improvements: 6 lb weight gain(he doesn't even gain that much in a whole year!), more pink in color, no more belly aches/gas/bloating, and is regular as clockwork now. He is slowly starting to gain some height. I have a feeling he will decide for himself that he will remain gluten free. He is liking the fact that he is starting to grow. I want him to stay gluten free, so my hopes by doing our little gluten experiment, will really set the idea firmly into his head also.

My youngest son has had a harder time emotionally and he is the one who IS diagnosed. It has been a year and he still gets upset sometimes that he is different than the other kids. He is getting better with dealing and accepting it and he has come a long way since last year.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#6 mushroom

 
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Posted 11 December 2011 - 04:06 PM

Let him take his cue from your attitude toward it. If you can act like eating gluten free is no big deal, then maybe he will too, especially if you can find things he likes that have no gluten to feed to him. I don't mean the kind of "Gee, isn't eating gluten free fun?" forced kind of cheerfulness, but just a matter of fact way of saying "this is the way things are for us, and although it is a bit different from what other people eat it isn't really that big a deal" kind of attitude.

For example, if he loves mac 'n cheese, buy him some Orgran rice pasta elbows and make a big batch for him (homemade is better anyway) that will last over several days. The Basco boxes are just too expensive for my tastes. You might try weaning him onto gluten free without even telling him, and then surprise him by saying "You haven't eaten gluten in a week :o " Just trying to put myself in the shoes of a 9yo and taking the "mum" anguish part out of it. :)
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#7 Di2011

 
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Posted 11 December 2011 - 08:56 PM

Thanks everyone! It is so nice to get some realistic advice. Liam fell ill the past few days. D on Thurs night, skipped school Friday, Friday night throat infection/bad asthma, Sat to Monday morning vomiting. He hasn't eaten anything since Friday night but he is getting much better today. :) :) Saw the doctor yesterday (Sun) and mentioned that we both suspected wheat/gluten is a problem. I got that silent stare that I'm sure many of you have witnessed. So we came out with more antibiotics and now preventative asthma treatment to trial. She wouldn't request tests or anything! exasperating. This is the same doctor who saw me when DH was at its worst and I remindered her of my history. She suggested the meds to get him well and perhaps a diary to track his asthma. And, of course, to come back in a couple of weeks to see how is going :angry:

I am actually content now to tackle this from home at least for the time being. He tried a little gluten-free toast this morning and said it was good!
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#8 Di2011

 
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Posted 11 December 2011 - 08:57 PM

And going to track down a doctor through our gluten-free or cealic groups!
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#9 Roda

 
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Posted 11 December 2011 - 09:32 PM

I was actually sad for my youngest son after I found out his blood work was positive. I knew he was going to have a hard time emotionally at first. I have no clue how a child would feel since I did not have that perspective.

The first thing I did was explain to him that his tests showed that he had the same thing as Mommy and that he would need to eat like me all the time now. I then took him grocery shopping to pick things out for his snack bin at school and to get a few special treats to pack in his lunch. His kindergarden teacher was wonderful and made a really good effort to learn with him. At one point gluten was eliminated from the classroom entirely! All the snacks were to avoid all the allergies/celiac in the room. This helped him so much and it didn't make him feel as different. The only exception was at parties, but his teacher would let me know ahead of time and we were able to provide similar items. Too bad his first grade teacher now isn't as forthcoming. I very much let him express his emotions about being gluten free and we would talk about it. I kept it positive. I told him that I understood how it feels to be different, but it feels better to not be feeling bad and sick anymore. I also was matter of fact with him that this is what we had to do. I told him that if kids picked on him to ignore them and it wasn't important what they thought anyway. I also told him that he was way braver than me because he was doing this as a kid. He liked that one. Mind you he was 5 almost 6 at the time. He has come a long way since then. He still will comment once and a while about it but shrugges it off so much quicker now.

It just really depends on your son's personallity on how he deals with it. My oldest is 10 and it's no big thing to him. He doesn't give a rat's behind what anyone thinks. I so love that about him. He is such an easy going happy kid. he went recently to spend the night at his friends house. His mom wanted to know if she should get him something. I told her no, it wasn't necessary that I would send everthing he would need. She was worried because they were going to send out for a pizza and didn't want to make him feel bad(It was to short notice to make a gluten-free pizza). I asked him if he cared and he said NOPE! He had a great time.

I think in time you will be suprised at your son's approach and attitude. Mine suprise me every day! I sometimes think we worry more for them than they do, but then again that's part of our job.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#10 Di2011

 
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Posted 11 December 2011 - 11:06 PM

Thanks Roda. Liam is coming around to the idea and he is a lot like your son - doesn't matter too much what others think. As soon as he is over his current illness I will make him a very yummy gluten-free pizza!
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#11 Ellie84

 
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Posted 11 December 2011 - 11:34 PM

Gluten-free can taste really good :) My BF prefers a home-made gluten-free pizza to any store-bought product. I'd say: if you can't get any help from a doctor, try the diet out with him.
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27, F, from the beautiful area of Twente in the Netherlands. English is not my first language, so I apologize for any errors.

Symptoms started in 2007, but no link to celiac disease was found until 2009. I learned of celiac disease through the internet, my doctor never recognized it. She put me on a diet before tests were done, so the initial tests failed. My GI advised me to do a gluten provocation, which had to be stopped too soon to take a reliable biopsy. Based on symptoms such as vitamin deficiencies, GI problems and osteopenia my diagnosis now is: glutenintolerant, suspected celiac disease. This diagnosis was in march 2010, and I've been so much better ever since.

#12 Roda

 
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Posted 11 December 2011 - 11:59 PM

Thanks Roda. Liam is coming around to the idea and he is a lot like your son - doesn't matter too much what others think. As soon as he is over his current illness I will make him a very yummy gluten-free pizza!

Your welcome and that sounds like a good plan!! My boys are begging me to make doughnuts.

My oldest boy had a girl in his class ask him if his sandwich was made with Udi's bread. Most 10 year olds are not going to ask that question. Come to find out her mom has celiac and eats it all the time.

Kids in my youngest boy's class are often curious of the food he has at lunch. We even had an issue at with some kids trying to take/ mess with it. We had to have a very long discussion about keeping hands to onesself. Russell got defensive, and I don't blame him, because he knows if his food gets CC'd he doen't eat. He didn't have a problem telling.
  • 1

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#13 Di2011

 
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Posted 12 December 2011 - 02:35 AM

Liam is much better tonight. He has had a reasonable amount to eat today and drinking plenty.
I still don't know how to handle his grandma (my mum) though. Even today she was all about getting "carbs" into him because he has been sick and not eating. How do you change a woman who is in 80's mode wrt diet?!
Ages ago I made gluten free pizza for Liam and a sleep over friend and they loved it. I think I will need to have a gluten free subtle transition plan for mum. Bring meals and ingredients etc.
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#14 dh mom

 
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Posted 30 December 2011 - 06:42 AM

Liam is much better tonight. He has had a reasonable amount to eat today and drinking plenty.
I still don't know how to handle his grandma (my mum) though. Even today she was all about getting "carbs" into him because he has been sick and not eating. How do you change a woman who is in 80's mode wrt diet?!
Ages ago I made gluten free pizza for Liam and a sleep over friend and they loved it. I think I will need to have a gluten free subtle transition plan for mum. Bring meals and ingredients etc.



Dear Di,

Your doctor sucks. Find another one. Your son is too young to be putting up with that attitude. Our son was diagnosed at 18 with DH. Personally, I don't see that an actual diagnosis is necessary on this. if it loooks like a duck, and walks like a duck, chances are....it's a duck. If Liam feels better on non-wheat foods, then dump the wheat!! There are now plenty of gluten free carbs out there to satisfy your mum with. Some of our favorite brands are gluten free panty for sandwich bread, Namaste (order onlline) for easy pizza, (no yeast, no rise, just add water and go), pamelas brownies, 123 gluten free.....there are many good products. Walmart has a terrific gluten-free section with bread/rolls made by Schar - an extremely good brand. Hard to taste the difference. BTW - our son grew 2.5 inches in college after going gluten-free. He didn't have the malasobtion irritable bowel issues, so we never knew till he blistered. he had pretty much stopped growing from end of 10th grd till end of 12th. went gluten-free, and three years later he has grown the 2.5 inches!! I know how hard this is for you. It tore me up for a good three years, BUT, guess what! When he went to college, lots of his friends have all kinds of allergies, nuts, shellfish, corn, soy. THis generation has the allergies. Your son will be fine. He will not be the odd kid out, or the 'weird one'. He will just be another kid with another food allergy. It will be okay. The important thing is to get him feeling well. He can handle alot more when he feels good. so, don't even think about it - dump the wheat. It does get better, I promise you. I've been where you are. That is why I so strongly said, dump your doc....food allergies are not a fad, they aren't going away. There are docs out there who will help you. Good luck.
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