Telling Our Daughter About Her Diagnosis

[cmdt]

Yesterday we found out that my youngest daughter (13) has had a positive IgA for celiac's. I was diagnosed this past January after going through YEARS of unexplainable symptoms. My middle daughter (15) was diagnosed in February, and again, it has explained much of what has been going on with her for quite a while.

I am FLOORED by this news. She has NO symptoms that we are aware of. Basically, we were only screening her because she had blood drawn for another reason at her physical last month. My oldest daughter (19) has had a negative blood test, and she is the one I would have expected to be positive.

My husband doesn't think we should tell our youngest right now. I think that's crazy, but then again, why is this kid going to want to change her lifestyle if there's nothing wrong? Our middle child at least had many reasons to see why going gluten free would help her. She had had major weight loss, joint pain, trouble sleeping, concentrating, etc. She was doing great when off gluten for nearly 3 months, but has been on a gluten challenge since April. We just got her follow-up blood results as well--positive (no surprise), and now the GI specialist wants to schedule her for an endoscopy ASAP. She is very resistant, and wants to wait until the end of the summer. Maybe they will give us a two for one rate at the hospital?!

I know this must all sound VERY confusing!! I am completely overwhelmed. Just to make it all more "interesting," our closest friends have dropped out of our lives just a week after my diagnosis--which is another whole posting for another time I guess.

Anyway, is there anyone out there who has gone through the diagnosis of multiple family members? Obviously, my daughters see how well we are handling the gluten-free thing. But when it suddenly becomes "your" problem, it's a whole different ballgame.

[celiacgirls]

I was diagnosed after my youngest daughter. I would have said I didn't have symtoms but my whole life has improved. I have more energy and focus. I have been able to quit taking antidepressants. I am less irritable even without the a/d. I know now those are symptoms of gluten intolerance.

My older daughter was diagnosed after me. She was sure she didn't have it but agreed to try the diet. I let her have lots of treats at first so she didn't feel as bad about giving up gluten. 10 days into the diet, she ate a cupcake and came home with a tummy ache, brain fog, and extreme tiredness. Now she doesn't give me any trouble about the diet. And this is a child who used to give me trouble about everything, so I know she must think the diet is helping her.

My point is if you can get your daughter to try the diet for a while, she might have some unexpected results. I agree that if you don't see anything positive from the diet, it would be extremely hard to do, no matter how old you are.

In my family, 3 out of 4 of us are gluten free. We are all probably going to be casein free, too. The one who is having the biggest problem with it is my husband, who can eat whatever he wants. I think it is easier for my girls because all 3 of us have the same restrictions.

[gfp]

cmdt:

I am being a bit blunt here, you don't know me but its my nature.

I do aim to shock you a bit but only to help you not be confused.

Yesterday we found out that my youngest daughter (13) has had a positive IgA for celiac's. I was diagnosed this past January after going through YEARS of unexplainable symptoms. My middle daughter (15) was diagnosed in February, and again, it has explained much of what has been going on with her for quite a while.

I am FLOORED by this news. She has NO symptoms that we are aware of. Basically, we were only screening her because she had blood drawn for another reason at her physical last month. My oldest daughter (19) has had a negative blood test, and she is the one I would have expected to be positive.

Why did they run the test? I would imagine because they thought she was at risk.

My husband doesn't think we should tell our youngest right now. I think that's crazy, but then again, why is this kid going to want to change her lifestyle if there's nothing wrong? Our middle child at least had many reasons to see why going gluten free would help her. She had had major weight loss, joint pain, trouble sleeping, concentrating, etc.

For all the reasons you just mentioned .... a postive IgA is pretty definitive wheras a negative is not.

IMHO ignoring this is no different to allowing her to smoke... but that is because I have years of being gluten-free and you are still new so Im saying that because I don't want you to have to look back in 5 years and feel guilty or she develops complications.

She was doing great when off gluten for nearly 3 months, but has been on a gluten challenge since April. We just got her follow-up blood results as well--positive (no surprise), and now the GI specialist wants to schedule her for an endoscopy ASAP. She is very resistant, and wants to wait until the end of the summer.

Again why? You are deliberatly poisioning your little girl to the ultimate end of damaging an important organ. To my knowledge noone has ever reversed a blood test proven diagnosis ...(they can have a -ve biopsy but the IgA is still positive). imagine the biopsy is negative .. what do you do then? continue giving gluten and see if it was a poor sample, retest and rechallenge?

What if its positive? will you rechallenge next year? If she is still IgA +ve and still gets ill eating gluten will you continue until the biopsy showns significant damage.

I know this must all sound VERY confusing!! I am completely overwhelmed.

Im not surprised.

The advice you are getting is inconsistent. What I recommend is browse this forum for issues other than villi damage, there are literally hundreds some serious others inconvenient and some life threatening.

[tarnalberry]

My husband doesn't think we should tell our youngest right now. I think that's crazy, but then again, why is this kid going to want to change her lifestyle if there's nothing wrong?

Your husband is wrong. If she is producing antibodies, then she is damaging her intestines. That puts her at high risk for nutritional deficiencies, secondary autoimmune disorders, and intestinal cancers, not to mention the neurologic complications and other non-GI issues. You already know that something is wrong.

(A little analogy - saying nothing is wrong is much like going to the doctor for your physical feeling just fine, having the doctor notice a mole, and having him/her biopsy it, only for it to return a skin cancer, but decide not to do anything about it because you fee fine. Instead, you wait for it to become aggressive, metastasize, and go into organs that are more difficult to treat, and suffer severely while you try to treat an aggressive, deadly form of cancer because you choose not to treat something that wasn't causing you problems yet, but was just waiting to do so.)

[jerseyangel]

Not everyone with Celiac has noticeable symptoms. There is at least one member here who tested positive only after her sister was diagnosed, and has no symptoms at all. I would look on this positive test as a gift! I wish I had been diagnosed years ago, before the damage caused my neuropathy and numerous additional food intolerances. Her test result is telling you that she *is* producing the antibodies that will cause inflammation and then damage to her intestines. My advice would be to let her know what is going on with her body, and have her join you gluten-free.

[TCA]

I know this must be hard, but I wanted to let you know that some people do have symptoms that aren't so obvious. I went gluten-free for nursing my celiac daughter. I never had serious GI issues and was always on the overweight side, so I never suspected myself. After going gluten-free for a while, I noticed the joint pains I had always had were gone, my irritability was better and I just felt better overall. I had an ulcer as a teenager, but never major D or anything. I don't even want gluten now that I feel so much better. You might find the same with your daughter. She might feel better on the diet. I'm not one to hide things and I think you are probably underestimating what your daughter can handle. Kids are amazing in how they can adapt. We just don't give them enough credit. good luck with everything. You have a lot on your plate!

[2kids4me]

Anyway, is there anyone out there who has gone through the diagnosis of multiple family members?

Yup, we are a family with multiple issues. It is the emotional side of adjusting to the diagnosis that is often overlooked and the difficulty of a parent having to tell their child that life has changed. I will add on a passage from an article I did for our celiac chapter... if only to let you know you are not alone ....

I am the mother of two wonderful children who have endured more challenges than many adults, and they always manage to smile and cope well. The same cannot be said of me as I have spent many nights weeping for them. These emotional releases are short lived but brutal in the hours after we add another doctor to our growing list of specialists. My tears flow from the sense of loss I feel for them, the loss of normalcy .... but what is normal anyway? I wonder what will happen next because that has been my experience - we solve one mystery which is soon followed by another. I am all too aware of the ability of the immune system to turn against its host.

Our daughter is 12 years old and reminds me often that she will be 13 this year. She was diagnosed with celiac disease in May 2004 after months of stomach aches, bloating, neck pain, back pain and migraines. An ultrasound ruled out a number of problems, and initial bloodwork was normal with the exception of an elevated sedimentation rate. All the sed rate indicated was that there was inflammation somewhere in the body - not much of a clue.

We were blessed with an astute pediatrician, who tested for anti-endomysial antibodies early on in the diagnostic process; they were as low as can be measured. Our daughter was referred to the GI clinic at Alberta Children's Hospital for a consult. The doctor was wonderful with her, and it takes a special person to work with her some days. You see, one of her other challenges is Asperger's syndrome; it is a disorder within the autistic spectrum and she can be.....well... non-compliant with doctors she does not know. She was diagnosed hypothyroid at 4 yrs old and she had recently recovered from Kawasaki disease - a condition in which there is acute inflammation of blood vessels, damaging the coronary arteries.

An endoscopic biopsy was performed and one week later we received a call to inform us that it was Celiac sprue. The doctor was very compassionate with our family and especially to our daughter as he explained everything. We then met with Lorna - a very knowledgable and patient dietician who gave us lots of information.

Our daughter's response to going gluten free was nothing short of amazing! It was like watching a small flower bud unfold its petals overnight and bloom into a magnificent rose. You just have to stop and admire it. She had no problem giving up gluten, it was as if she instinctively knew that it was a poison to her body. The migraines and neck aches disappeared within days, her energy levels went WAY up, no stomach aches to ruin a night's sleep, and best of all, her beautiful smile was back. Teachers marvelled at the improvement in her attitude and daily work, some stopped me to make enthusiastic comments during my volunteer activities at school. It was glorious.

Our son is 10 and was diagnosed with celiac disease in July 2004, only a few months after his sister. He was tested for antibody levels as part of the screening program for families, and in hindsight he had many symptoms, just not as dramatic as his sister. Leg and joint pains would haunt him almost every night - I thought they were growing pains. He had stomach aches and heartburn but complaints were short lived and seemed mild. The same day he had his cast removed in July, we got the blood results. Oh, I haven't told you about his arm... our son broke his arm on the last day of school before summer holidays started. Boys and bikes.....

He had higher antibody levels than his sister and the doctor was almost certain we had another celiac on our hands. The GI clinic booked us immediately for an endoscopic biopsy. Confirmation of celiac disease in a timely manner was important because Matthew also has Type 1 diabetes, diagnosed on his 9th birthday, only ten months earlier. He spent his birthday in the hospital learning about diabetes. Celiac disease would impact his diet and insulin regime. By August, we had our answer. I held him as I broke the news, he felt life was very unfair and he crumpled in my lap sobbing - asking "WHY did he have to have celiac disease when he already had enough to handle - giving himself insulin, testing his blood daily, and counting carbs."

I have found nothing in life more difficult than telling my children that they have a condition that will impact their life, and doing it more than once has become tedious. I saved my own grief until after the kids had gone to bed and silently asked the same questions whilst I buried my head in a pillow, wishing I had some magical powers to make it all go away. When we saw the doctor, he was again very compassionate with our family, recognizing Matthew's grief and empathizing with him. Matthew left feeling more positive about the future.

Our son's response to the diet was less dramatic than his sister, but soon we noticed that the leg pains were gone, so too were the heartburn and intermittent stomach aches. His blood glucose levels became more stable and he accepted his conditions as "one of those things you gotta deal with". Both children are doing well, reading labels, baking bread, and writing shopping lists for favorite items. They have recognized that there are more gluten free products than those with gluten and they focus on what they CAN have rather than what they cannot. We do not let medical conditions limit our fun or activities, we just have to plan ahead for some events.

[CarlaB]

My 13 year old daughter has no symptoms either (but I'm hoping she can concentrate better at school gluten-free). She was tested because of me and because I thought her learning difficulties might be a result of the gluten. She feels no different gluten-free, but she is very dilligent with it. I just explained to her that she was lucky that she didn't get a sick as I was before finding out! She understands that. The diagnosis might not bother her as much as it bothers you and your husband.

Your daughter can contact mine through this message board ... her name is Chloeb

[chrissy]

three of my girls were diagnosed with celiac the week between christmas and new years. one daughter (15) had rashes, and her twin sister had been nauseated for about 3 months. my 11 year old really didn't have much in the way of symptoms. we had just tested the rest of the family after the first twin had gotten positive blood work. my basically symptom-less 11 year old has followed the diet better than her older sisters and is the only one of the 3 to have her blood work back to normal after 6 months. we know that our 17 year old son also has the gene for celiac, but doesn't appear to have any active disease at this time.

i had several break downs early on---but quit crying after one of the girls made a loaf of bread that tasted good.

[elye]

I can't speak to the issue of one's children being diagnosed, as both my kids have had a "negative" blood result. I however CAN talk about being a silent celiac, as I had absolutely no symptoms before diagnosis, with the exception of low iron (but what menstuating thirty-something woman ISN'T somewhat iron deficient)? My sharp GP decided to pursue things and ran a bunch of tests, the celiac panel being one of them. SURPRISE! You can imagine the denial going on with me. But the subsequent biopsy showed some damage, and there it was...proof. But an interesting thing happens, something that I think your body puts in place to make you stick to the regimen when you're less than convinced and/or angrily denying. After I reluctantly went gluten-free, I found that I DID start to react when I was accidentally glutened. I was suddenly experiencing the classic bloating, pain, D, and the reactions have gotten more pronounced so that now gluten causes REAL discomfort. My lower intestine has been healing, and therefore now reacts to the gluten. This might be a reason for asymptomatic celiacs to decide to stay on gluten, so it may be an idea not to tell your daughter that this may happen...Hope this helps!