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Guest andie

Do You Suspect Celiac In Your Child?

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Guest andie

Hi

I will try to be brief.

I have been reading some of the posts about parents suspecting celiac disease in their children. Some of the stories are horrifying, let alone the mental anguish that the parents must have experienced.

My sons story is similar to many I read here, but this is not about him. This is for the parents of these kids. However, to understand what I mean I will provide the basic details.

My son had colic from the day he was born. My husband slept on the livingroom floor with him for the first year of his life bouncing him periodically through the night to settle him.

When he was 2 I took him to a pediatrician because his food would come through him whole. Even the juice buds of an orange would not be burst! He had 4 - 5 stools per day. I was told "he has some kind of malabsorption syndrome, but because he still falls in the lower end of "normal percentile" NOT TO WORRY ABOUT IT!

When he was 8 he got extremely sick. (He always had high unexplained fevers.) I was sent to another pediatrician who did a battery of blood and stool tests. He was anemic. His iron levels were virtually nonexistant. He was neutropenic (no cells to fight infection) His celiac tests were neg. He ate all the gluten that an 8 year old eats. He has never once in 8 years slept through an entire night.

"I feel sick!" We thought he was 'nervous'. He was put on iron supplements. There was no follow up.

This past summer (my son is now 10) he started having increased abdominal pain. Migraine headaches. My son NEVER complains about how he feels. When he tells you he is sick there is something major league wrong with him! I had heard some of the other parents talking about one of the kids with celiac. I did some research. I started my son and husband on a gluten free diet 6 months ago.

Now for the parents part.

Within 2 weeks for starting the diet I knew my son had celiac disease. After 6 months of being on the diet he is a completely changed child. For the better. He has always been an 'easy' child to raise. (We have 4.) He has always been quiet, never complaining. He has always been a poor eater, but we would insist and he would do it. We thought he was 'lazy'. Always having to be after him to do his chores, his homework, anything athletic. We put him in hockey. He liked it, but was never very enthusiastic. Wanted to play, but was tough to get going. When he was 8 and discovered his anemia, we put him in goal because of his lack of stamina. He was forgetful and has a language articulation problem. All that could be explained. 'It runs in the family.'

All that has changed. At almost eleven he slept for the first time through the night and has not awakened for months. He 'enjoys' his food. He borders on hyperactive and will sometimes play 3 games of hockey a day. He is no longer a 'slob'. He 'chats'. I swear he has grown 4 inches in the last few months. He has FAT! (not much, but some.)

But the guilt of the mother is something else.

I realise now that he has grown up thinking that feeling awful is 'normal'. That he just assumed everyone felt like that. There was no sense in complaining because he didn't know what 'normal' was like. His being a slob and lack of motivation was due to his illness.

What does it matter to have a positive blood test for celiac disease? His was neg even when he was being totally glutened. Yet there is not a doubt in my mind that he is.

Why stick in needles and give anesthetics and do biopsies with potential risks to discover what the diet can already tell you?

What is the advantage of having your insurance rates go up and have to pay for the new diet on top of that? Isn't that a double wammy?

If you think your child has celiac disease and they are very sick and showing symptoms, what does waiting a few weeks for tests do? Tests that will be potentially neg. Tests that are expensive. Then what? Besides prolonging something that you think you can fix NOW.

So for you parents out there that suspect the disease? USE THE DIET AS A DIAGNOSTIC TOOL! If it works for your child and they get better and they feel better, who cares what the tests show! There is absolutely NO advantage to having it medically documented.

As one writer said, some people choose to be vegetarian. Because it makes them feel better for whatever reason. My son chooses to be gluten free because it makes him FEEL BETTER! (act better, talk better, sleep better .........).

I am concerned because I think there is too much emphasis being put on the results of the testing. i have read posts about it being up to 100% accurate for the antibodies and genetics. I have a living example in my house that proves otherwise. And I have the guilt of not thinking of it sooner. I live with the fact that my son has been sick for 10 years and I have been serving it to him on a plate!

We should start a survey to ask how many people on the board have negative tests but positive results with the diet. I bet there are more than a few

And if you are hesitant about the cost of the diet, well consider the medical expenses down the road.

Consider the savings in diapers and drugs and medical bills running from Dr to Dr.

If it doesn't work then stop. That's easy enough.

There can be no dollar value placed on the health of a child.

Andie

P.S. I guess the 'brief' didn't work!

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Very well said, I think.

I agree very much. If the tests were more accurate, it'd be different, but they're not! Why set very much store in something that's so unreliable???

Your story about your son was heartbreaking. I am so glad he's doing so much better!!!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Andie, I agree with you completely. I am very glad your son is doing well now. I just wished my teenaged youngest daughter would agree to give the gluten-free diet a try without positive tests! She tested negative on the bloodwork a year ago, and tells me that it has been proven she doesn't have celiac disease, and that's that. I am now having her tested with Enterolab.

I was much like your son, feeling terrible, and thinking that is how everybody feels. So, I forced myself to do the things they did, because, after all, if they could do it, so could I, right?

I did all the fun things they did, except I didn't have fun, it was hard work for me to keep up. I was hurting and had no energy.

I was considered lazy, a slob and according to my husband didn't love him enough to care to keep the house spotless, and cooking nice food all the time for 50 years, before I myself figured out the gluten connection. By then I had too much damage, I don't think it is possible for me to really get well any more.

Try not to feel guilty. You took your son to the doctor (my mom didn't even do that), and it isn't your fault that the doctors are so clueless about celiac disease. He will hopefully heal 100% and have a great life from now on. And you figured it out, good for you. You are a great mom.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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What great timing to read your story! I started my son on a gluten free yesterday (11 month old) He too has not really ever slept through the night due to what I am guessing is gas/belly pain. No help from doctors in terms of celiac suggestions, but my pediatrician has been very open to any testing or referrals I have asked for. Still the gastroenterologist was quick to tell me that they only find, a problem with these "fussy kids..... 5% of the time". Well I know my baby and he is not "fussy" he is in pain. He is also little. (his story: http://www.glutenfreeforum.com/index.php?s...p;#entry354581) you may have already seen it. So we will see how it goes with this diet. I am a little concerned about watching for the hidden stuff, avoiding the big obvious culprits are easy. I am hoping on one hand for some relief with this diet, on the other hand I hope it is something else that wouldnt be a life long sentence, but either way I just want some relief for him. Thanks for your story, it was a refreshing perspective on the subject!

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Guest andie

Thank you for your support.

ursa major, I sit here and wipe away the tears reading your story!

My son tried SO HARD to be 'normal' and do the things that all the other kids do. He is a real source of inspiration for my husband, who now has psoratic arthritis as a result of his undiagnosed celiac. On the days when he feels really bad he looks at my son and tells himself that if he could drag himself out of bed everyday for 10 years, then so can he. He also looks at his son and sees him 40 years from now if he hadn't been diagnosed. We believe we have averted potential disaster to his health.

I have become a raving, lunatic, overprotective mother when it comes to my son's diet! If you knew me you would know what a GRAPHIC picture that presents.

I tell absolutely everyone about celiac! I am sure my whole community is aware of it by now.

My sons most touching story is one about school. They have a mini Fall Fair where all the kids submit things they have made. He asked this year if he could make brownies. There was a category for cooking. He made gluten free and attached a note explaining what celiac was and wrote "HI. MY NAME IS ......... I AM GLUTEN INTOLERANT. I MADE THESE BROWNIES TO RAISE AWARENESS OF WHAT IT IS LIKE TO HAVE CELIAC DISEASE. THERE IS NO CATEGORY LABELLED 'SPECIAL FOODS FOR SPECIAL KIDS' . WHEN I EAT GLUTEN I FEEL REALLY BAD." He folded up the note and put on the front, Please read AFTER the judging.

He won first place!

Andie

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Please don't feel guilty. It sounds like you're a great mom, who never stopped looking for answers for her son. That's so much more than many parents would do. I too know the feeling of guilt, I think many parents experience it, at least in the beginning. I felt guilty about not pushing harder for answers for my son. Those are feelings we must all learn to move past.

My son always had symptoms as well. As a breastfed baby he constantly had gas and would spit up. He would alternate between diarrhea and constipation as a young infant, but diarrhea ended up predominating. His soiled diapers would stink up the house and clear rooms. The doctors informed me that breastfed babies' bowl movements should not stink, am I sure I'm exclusively breastfeeding? His growth began to slow dramatically after 6 months. (Keep in mind this is shortly after cereals were introduced.) He also had horrible sleep patterns. For the first two years of his life he would wake up from 1-3:00 am and stay awake for HOURS. As he grew his diarrhea continued. He had about 3 explosive stinky bowl movements that he could not possibly control everyday. Many foods appeared to never get digested. He also had a horrible appetite. He only ate carbs, dairy, bananas and poultry. By his third birthday he had completely fallen off of the growth charts.

After I had been dismissed by so many doctors, I was hesitant when my mom told me to take him to the doctor at 3.5 years old. I said that they will tell me nothing is wrong and I even put off making the appointment. (This is where the guilt comes in.) I could not get in to see his doctor, so I reluctantly booked an appointment with a new doctor at the office. That day she ordered tests for celiac disease and an array of allergies. (With all his symptoms no other doctor had even tested him for food allergies!) His tTG levels were 3 times greater than the normal range for people over the age of 2 years old. The new doctor instructed me to start the gluten free diet right away and make a gastro appointment. In the month it took up to get in to see the gastro, my son's dietary response had been amazing. All negative symptoms reversed and he gained over a pound!!! The gastro spent his entire time with me trying to push me into a biopsy, which I adimately refused. I am an educated woman, and I can find no reason why they should not treat him for celiac disease. It is so obvious to me that it is a 100% accurate diagnosis.

So, I kept the new pediatrician as his doctor, vowed to never go back to that gastro again, and continued him on his gluten free diet. I will never give my son so much as a crumb of gluten to satisfy any doctor's curiosity. Six months later, my son is doing great. He had gained 4.5 lbs! He's 4 and a quarter years old and he's nearly reached the weight and height suggestions for 4T clothes! (The celebrations only parents of children with celiac disease know! :rolleyes: )

My main point to all my ramblings is that as parents, you know when something is not right with your child. Don't be afraid to advocate for your child and do whatever helps them--even if it is not under the guidance of a doctor.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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Guest andie

Well said Jenny.

I am glad your little guy is so much better. It is such a relief to finally know what is wrong with them. And believe it or not it is such a relief to know that I can fix this with a diet compared to life long drugs.

The expectations of the Doctors is somewhat high after reading so many boards. I must admit that I have not been unexposed to celiac all my life. In fact a good friends mother was diagnosed years ago and was very sick. I in fact am a nurse. Celiac is such a obscure diagnosis that it is generally just forgotten as a condition. I have had to educate the Doctors that I work with, and there are many, and the only one that seems to know much about it is the gastroenterologist. This being said it is also annoying that once the idea is presented to them, they all want to do expensive tests and difficult procedures. Or they dismiss the observations of the parents because it is something they know little about. That's O.K. for an adult who can decide for themselves how to proceed, but in the case of a child, especially very young ones, their understanding of why you are doing these scary things is limited. Especially when ultimately the 'cure' will be the same.

When a Doctor will not listen to the concerns of a parent, its time for a new Doctor. One that will at least consider what you are telling them and add it to their own observations.

Andie

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I share your happiness! I was dx'ed after 13 years of unexplained illness. I immediately tested my three kids. My dd's test was 1 POINT below positive. I had her gene tested and she is DQ2 so she went off gluten. WHAT A CHANGE! I posted recently about the wonderful turn around she has made. She isn't officially dx'ed but there is no way you could convince her to eat gluten again. Our lives have been restored. Our boys gene tests are in the works and they will go off gluten as well if they have the gene.

Andie, the story about the brownies is just fantastic! That made me tear up!

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Guest andie

Thank you for your responses.

It is encouraging.

I would like to keep this message in the forefront so more parents will see it, especially those who are seeking help for the first time.

Prompt treatment is always the best and may save some kids from suffering more than they need to.

Andie

P.S. Yes we eat alot of brownies in our household these days, although we are graduating to chocolate cake!

FYI- We went to a hockey party today for the boys and all the parents were asking me about the celiac diet. One of the kids is already celiac, one of the parents is starting it because she thinks its more healthy and two of the other parents wanted to discuss symptoms. Progress in awareness!!

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I am so glad that your son is feeling better. I was DX in August and tomorrow I find out the results for my childrens bloodwork...I am a bit nervous but I know how AMAZING I feel on the diet and thats what is important.

I was not aware that unDX celiac may cause sleep issues, my son is 13 months and never sleeps through the night...well, unless he is sleeping with me. He was born at 36 wks and was just 4 lbs, he stopped growing at 28 wks...apparently from what I gave read, probably from unDX celiac. He was a difficult infant, very clingy..and very mommy. But the love of my life. He also has bad rashes in his diaper area (not actual diaper rash kind)

My daughter is 3 1/2. Typical symptoms....Very irratible, constipated,skinny, bags under the eyes,eats constantly never gains weight. And she has been having alot of accidents (peeing her pants). She is the one I am most worried about, and I have been decreasing her gluten intake.

If either of my kids are positive, they will both go gluten-free. And if they are neg, the will both have decreased to no gluten.

Thanks for your story...


1 negative Bloodtest.

2 positive Bloodtests.(years later)

Positive Biopsy 08/13/07

Gluten Free since 08/23/07

Jess (31)

Daughter (03/23/04) Negative bloodwork (10/22/07)

Son (09/14/06) Negative bloodwork (10/22/07)

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I share your happiness! I was dx'ed after 13 years of unexplained illness. I immediately tested my three kids. My dd's test was 1 POINT below positive. I had her gene tested and she is DQ2 so she went off gluten. WHAT A CHANGE! I posted recently about the wonderful turn around she has made. She isn't officially dx'ed but there is no way you could convince her to eat gluten again. Our lives have been restored. Our boys gene tests are in the works and they will go off gluten as well if they have the gene.

Andie, the story about the brownies is just fantastic! That made me tear up!

Just wondering what you did to get the dr to give a gene test??? I have taken my daughter to 5 different dr's and they flat out refused to give her the test!! ( I have the DQ2 gene, and DQ3 gene, and officially dx'd )

She is off gluten and has done so well, finally after 12 YEARS SHE finally slept through the night! She has Hasimoto's thryoiditis, but I know she is celiac as well.


Feb 9, 07 - Positive gene test D2 -Celiac Disease and Positive D3 for Gluten Sensitivity-Double Whammy!

Positive blood test for antibodies for celiac

SEVERE Gluten Ataxia - trouble speaking - could not even turn my head side to side - almost bedridden

March 07 - 2 different doctors have documented my records as confirmed Celiac

Oct 07 - found a secret to feeling better - no processed foods - The healing comes from eating raw vegetables, and fruits!

Husband - tested = celiac gene+diabetes gene

3 children-

youngest - doc wont test has w/ Hashimoto Disease

middle- tested = celiac gene+lymphoma gene - dx-celiac

oldest - ignores warnings

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Guest andie

But what if the tests are negative as with my son? Will you be going totally gluten free?

Especially with an already positive family history.

This is the exact point I have been trying to make.

Try going totally gluten free for 6 months. You already have a gluten free person in the house. Are you going to cook two different meals for your household? Believe me trying not to cross contaminate is a nightmare.(My oldest two are from a different gene pool) Then there is the issue of some getting the 'good' stuff and some not. When the children are young it is best for them to grow up with the understanding of what they can eat. When they are older they can decide for themselves.

It sounds like you have already decided to do this and I believe it is a good idea. It certainly will not hurt any of them and in fact may make everyone feel SO much better.

Yes, it is a little more expensive. And yes, it is a little more work and planning, but is it worth all the kids sleeping through the night? Not sleeping through the night is in itself a big health issue, both for them and you. Well rested people are happier people!

Thanx for your input. I encourage people to give more opinions! Does anyone have a different point of view?

Andie

I am so glad that your son is feeling better. I was DX in August and tomorrow I find out the results for my childrens bloodwork...I am a bit nervous but I know how AMAZING I feel on the diet and thats what is important.

I was not aware that unDX celiac may cause sleep issues, my son is 13 months and never sleeps through the night...well, unless he is sleeping with me. He was born at 36 wks and was just 4 lbs, he stopped growing at 28 wks...apparently from what I gave read, probably from unDX celiac. He was a difficult infant, very clingy..and very mommy. But the love of my life. He also has bad rashes in his diaper area (not actual diaper rash kind)

My daughter is 3 1/2. Typical symptoms....Very irratible, constipated,skinny, bags under the eyes,eats constantly never gains weight. And she has been having alot of accidents (peeing her pants). She is the one I am most worried about, and I have been decreasing her gluten intake.

If either of my kids are positive, they will both go gluten-free. And if they are neg, the will both have decreased to no gluten.

Thanks for your story...

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Guest andie

Hi

See reply to post #12

Again. Why do you need expensive gene testing for something you already know? What if finally you get a Doctor to do it and it comes out neg? Does that mean you're going to give her gluten?

I doubt it considering the response you've already had.

Forget the tests and move on. In your heart you know you are right and doing what is right for your daughter. In the end, after all the run around, that is all that matters. :)

Andie

Just wondering what you did to get the dr to give a gene test??? I have taken my daughter to 5 different dr's and they flat out refused to give her the test!! ( I have the DQ2 gene, and DQ3 gene, and officially dx'd )

She is off gluten and has done so well, finally after 12 YEARS SHE finally slept through the night! She has Hasimoto's thryoiditis, but I know she is celiac as well.

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The gene test--We went through Enterolab. Our insurance wouldn't cover it and it was THOUSANDS of dollars through the traditional labs. It is less than $200 with Enterolab. And to be frank, I don't want this on her medical records right now. It is hard enough to get covered and with a chronic illness it can be impossible. I don't want that to be an issue for her as an adult. (I'm thinking ahead--she's only 9!)

For going gluten-free for the family--if one of our boys comes back with the gene our whole house will go gluten-free for six months. If I see the improvements with them I've seen with dd it will be a done deal. The boys are less symptomatic than dd but I believe celiac disease can be very subtle in kids.

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Guest andie

Well said.

And I should take my own advice.

My 16 and 17 year old refuse, but then again they are different gene pools and can decide themselves. However, my 7 year old is a very picky, thin grazer. I believe after reading this she has just become gluten-free. She is a good sleeper and has no symptoms, but you are correct that she should have a trial.

Thanx for your insight

Andie

The gene test--We went through Enterolab. Our insurance wouldn't cover it and it was THOUSANDS of dollars through the traditional labs. It is less than $200 with Enterolab. And to be frank, I don't want this on her medical records right now. It is hard enough to get covered and with a chronic illness it can be impossible. I don't want that to be an issue for her as an adult. (I'm thinking ahead--she's only 9!)

For going gluten-free for the family--if one of our boys comes back with the gene our whole house will go gluten-free for six months. If I see the improvements with them I've seen with dd it will be a done deal. The boys are less symptomatic than dd but I believe celiac disease can be very subtle in kids.

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Don't beat yourself up or feel guilty about it taking so long to get a diagnosis for your son. You are not a dr, you are a parent doing the best you can. At least your son sees such a difference in his health you probably wont have to fight too much to keep him on the diet.

My parents wouldn't have me tested for Celiacs when I was a child and having regular abdominal problems and other issues. Celiacs runs in our family. They never insisted that I get tested for Celiacs as an adult when I was chronically ill. Instead they started to insist that I must have cancer or be annorexic. I finally got a diagnosis of what was wrong with me - Celiacs. I do not blame my parents or resent them for not insisting on having me tested for celiacs. I wish they would have done it. I wish I would have known about celiacs as a kid because I would have avoided a lot of problems. But such is life. I know now and I am healthier now.

For my husband, me having an official biopsy diagnosis has stopped a lot of aurguments. He can't debate or arugue whether or not I am being too strict or if this is all in my head. I have to solid proof and that ends the arguments. So for me, having an actually diagnosis on my daughter was required. She went to the drs got the scope and still no positive diagnosis. She has a gene. She is two. We tried eliminating all dairy, which is a big problem for her, but it did not fix the problems. So she is now gluten free, dairy free and doing great. I have to point out each negative reaction to gluten substances and each positive reaction to the diet to my husband. First solid poop, lack of diarrhea, missing rash that comes back with gluten, change in color, ability to sleep through the night, hair and nails finally growing, and most importantly - she is no longer starving all day and night. She eats and eats well, but she gets full. He needs to see the proof. So he is finally in agreement that she has celiacs. Whether or not the dr agrees is another issue. But since she has all of a sudden grown and gained weight, I think he will agree that she has celiacs too. I don't need further testing unless it is required for school, which I doubt.

My point is just that you can beat your self up when you see the changes in your child on the gluten-free diet, or you can see it as a positive. It may have taken a long time to find out what was wrong, but look at him now. He is a different child. Happy and healthy and he will not hold ten years against you when he has a life time of health in front of him! Best of luck.

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I couldn't agree more!!!!! My daughter was the first to be diagnosed, but had I known more back then, I never would have waited so long. She was so very, very sick by the time we figured out (on our own like most parents) what she may have, and finally got a positive diagnosis.

I had my two boys tested as well, both were negative. But after doing some reading and research, I decided we would all be better off gluten free. It has totally changed our lives for the better, and I'm so glad I didn't wait until they were really sick. Eventually, we all became casein free as well....which has pretty much put an end to all ear infections and colds.

Something funny happened the other day at my 15 month old's check up. The doctor (who I really like, but he's clueless when it comes to alternative foods) commented on how little he has seen Lucy, aside from her well child checks. She hasn't had a single ear infection or cold, she just doesn't get sick (knock on wood). In the next sentence, he expressed his concern for her lack of calcium since she doesn't drink cow or soy milk, then he questioned why I don't give her dairy, since she doesn't have a true milk allergy. I see the connection between her diet, and wellness, but the doctor clearly does not, lol!

I think tests for Celiac really have a long way to go, and I don't see that changing anytime soon. I wish a had a more positive outlook on the future of diagnosic protocol and medical enlightenment, but since the cure is a diet rather than a new pill, I think this disease will continue to get pushed aside.


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Guest andie

gfgypsyqueen/Tamara

I have stopped beating myself up over this. You are exactly right and I have decided to move on.

It has helped immensely to hear of all the other stories and know that I am not the dumbest mother in the world! Ha! Ha! My son would never dream of blaming me. He thinks I am the smartest person on the planet for making him feel better. (Of course that doesn't always help the guilt relapses!)

As for the Doctors, lets not give them too much of a bum rap.

A general/family Doctor is trained basically to narrow an illness down to a specific body function and then refer to someone who specializes in that area. All specialist do just that----specialize in their own area. Would you go to a skin specialist for a brain operation? Would you expect a skin specialist to know everything about the inner workings of the brain? You would expect some general knowledge, but you want someone who concentrates on nothing else!

As far as knowing all the aspects of all the different diets, that is why they refer you to a dietician.

Think of how complex it is for those of us that are actually doing it. We are always learning something new.

The ideal Doctor out there is a walking computer with access to all the info a computer can contain.

When you find one, I want his number! Odds are though, he'll have zero personality!!

The most important qualities of a Doctor is that he LISTENS, you LIKE HIM, he instills CONFIDENCE, and when he is unsure he SAYS SO and REFERS! But they are only human and have all the flaws that go with that!

Just a thought.

Andie

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Both my kids came back negative for Celiac but the doctor said to test them again in 3 years or if they have any symptoms. I am shocked that my daughter is neg, Iwas thinking for sure she would have it. But the rashes are still a mystery. I am not convinced that its neg...I will still try gluten-free.


1 negative Bloodtest.

2 positive Bloodtests.(years later)

Positive Biopsy 08/13/07

Gluten Free since 08/23/07

Jess (31)

Daughter (03/23/04) Negative bloodwork (10/22/07)

Son (09/14/06) Negative bloodwork (10/22/07)

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Guest andie

Matilda

Thanks for your input. :)

I understand completely how some people would feel better about a positive diagnosis from a professional. Having the diet alone work for you is kind of an abstract idea.

And telling people "I've been diagnosed with celiac." holds alot more weight with people then "I self diagnosed myself with celiac." Because celiac is in itself still a somewhat obscure diagnosis, most people just don't pay attention. Or their lack of knowledge encourages them to dismiss it.

Sometimes for some people a 'professional diagnosis' is healthier psychologically, and that is important too.

Andie

I think reasons for getting a formal diagnosis would include helping a child remain gluten-free through times when symptoms remit, which often seems to coincide with the teenage years, when children may not be happy to listen to mom so much, and to get the benefit of new treatments as they come along.

I understand the frustration at not getting a diagnosis, and the relief in finding a treatment that works even without it. But I do think it's worth a shot.

I say this as someone self-diagnosed, who would welcome a formal diagnosis at this point.

Best wishes,

Matilda

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Guest andie
Matilda

Thanks for your input. :)

I understand completely how some people would feel better about a positive diagnosis from a professional. Having the diet alone work for you is kind of an abstract idea.

And telling people "I've been diagnosed with celiac." holds alot more weight with people then "I self diagnosed myself with celiac." Because celiac is in itself still a somewhat obscure diagnosis, most people just don't pay attention. Or their lack of knowledge encourages them to dismiss it.

Sometimes for some people a 'professional diagnosis' is healthier psychologically, and that is important too.

But at this point I am not willing to submit my son to gluten just to get a professional diagnosis. I'm not sure he would even understand why I was doing it.

When he is old enough he can decide for himself.

And as far as the teenage thing goes, I have 2 of those. If they decided to eat pizza at a friends and were truely gluten intolerant, they would only do it once! If its one thing that teenagers are good at, its self gratification. Barfing everytime they drink beer will not raise their status in the complex social circles they travel in.

Andie

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Matilda

I encourage you to get back on that 'hobby horse'. I have asked for all opinions and I welcome any points of view! :)

As any mother, I have my days where I doubt what I am doing. Would testing allieviate that? What if there is something I am missing and now it is being masked by going gluten free? So far I have seen no literature to that effect and so continue on with what I am doing.

It is difficult for my son to always say NO to all the treats, being singles out, always having people ask him what he can and cannot have. Even my sister will make his favorite apple pie for family get togethers and he cannot eat it.

But the fact that he says NO speaks volumes to me.

We are a very busy household with 4 children and running to MACDONALD's became a way of life for us. That has all changed.

I do not by any means discourage testing. Gene testing is probably the only test that maybe would give some piece of mind. It is relatively uninvasive. The others are just too unreliable and subject to many alternating factors. But when I read some of the horror stories about how long these children wait for Doctors, then testing, then results................ Or people who have been gluten free and reintroduce it only to become gravely ill? Why?????????

If my son had been diagnosed with Crohn's, then I would most assuredly want a positve diagnosis. That would involve heavy duty medication that in itself causes its own problems and I would want to be sure before I subjected him to that.

But in my opinion, getting him to eat healthier and having him feel so much better is a bonus. If he has to have SOMETHING then celiac is what I would pick because the treatment is natural.

(That statement should stir up a hornets nest! ) :lol:

Andie

I whole heartedly agree with you about the processed food. It is so genetically altered now that I believe our bodies are beginning to regect it as 'a foreign substance.' It took a long time for humans to genetically evolve. It was only been 50? since the wheat we eat today has been altered dramatically. I just don't think the human body can keep up!

The diet really isn't an abstract idea at all to me.

With or without formal diagnosis, I think being completely gluten-free is extremely difficult to do, and that's where the problem lies.

What I initially thought was a very simple solution to a problem really isn't, because it is so difficult to avoid gluten, and it takes such a long time to recover from such small amounts.

So, I think bravo to everyone who manages to make their child or themselves healthier despite the advice they're given. We have to do the best we can. For children especially, the tests are unreliable. On the other hand, for some there may be a window where the tests come out positive in childhood. I think if you can arm your child with definite knowledge as he or she goes into adulthood that might be a very good thing.

The other reason for testing was new treatments. I'm very motivated, reasonably educated, and am into my 3rd year of being gluten-free. I think I'm experiencing the consequences of being glutened about 1/4 to 1/3 of the time. The diet really doesn't seem like a good enough treatment to me.

Initially I felt very empowered by being able to treat myself by diet. I'm not saying I want to eat gluten, but our food is so highly processed that it now seems to me that it is almost impossible to completely avoid gluten.

Whoa, I got on my hobby horse. This isn't something you will hear often, if at all, and it's not something I've seriously considered until recently. But really, if I could take something that would limit the effects of gluten, I would take it, and if I had to get myself diagnosed to be eligible to take it, I would go out of my way to do that.

I'm sorry I'm hijacking your thread, Andie. I'm delighted and not at all surprised that the diet changes are working. You asked for alternative opinions, and this is mine, although I agree 100% with everyone, in the absence of a formal diagnosis, the diet is the best test.

Congratulations on getting to the bottom of your child's problems.

Matilda

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But in my opinion, getting him to eat healthier and having him feel so much better is a bonus. If he has to have SOMETHING then celiac is what I would pick because the treatment is natural.

(That statement should stir up a hornets nest! ) :lol:

Andie

No, I totally agree. Hey, Celiac sucks- every once in awhile Lucas gets bummed about something he loved and can't have, like Italian bread or Pizza Hut pizza, and when he gets sad I want to bawl my eyes out... But I would MUCH rather him have something that can be controlled by diet, rather than something that requires medication for the rest of his life!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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