Help I Don't Know What To Do!

[jaybirdsmom]

My son is 17 months he started having unexplained diarhea and vomiting from 11 months until 14 months without the doctors doing anything about it. We saw 9 doctors and went to the ER 4 times before a resident in the pediatric clinic at the hospital took the time to go through family history and order test. She sugested Celiacs and gave me a couple of web sites, she also told me that if it was that it was controlable with diet. When i got home i read up on celiacs and its symptoms and it described my son to a tee! it was scary!!! i read about the diet and started him on it before the doctors really tested him for it!! I was suposed to wait for the doctor to refer me to all the specilist but it would take about a month or two for the pedeatric GI to have an appointment available. My son was already very underweight all he would do was cry, vomit and lay there. The doctors would tell me that it was a virus and that he should be oka because i was keeping him hydrated. I couldn't wait for another doctor!! After four days in a stict gluten free/wheat free/lactose free diet he was sleeping through the night, he was smiling and he was starting to look like a normal little boy!!

Now that the GI doctor saw him this past week of course she dosen't want to mess with sucsses, she wants him to keep getting better but she wants to challeng it to see if indee he has Celiacs. The blood test that he had were inconclusive but the doctor told me that it did show that he had an inflamatory process occuring in his body. (Whatever that means?) She wants to see in six months if we can challenge it. Does anyone know how is it exactly that they challenge Celiacs? What do they have to do and for how long? Please help!!

[mouse]

My understanding is that the gluten challenge consists of you feeding your son gluten, to the equivelent of 3 slices of bread a day, for 3 months. And then they do the blood works, which are NOT totally infallable (sp). You can have a false negative, but not a false positive. I would wait the 6 months and keep him totally gluten free and then convince the doctor that by how improved he is, that you insist that she does not test him, but list him as gluten intolerant. This still gives you rights when he starts school. The diet is definately a diagnostic tool and should be considered enough by a caring doctor. Good luck and I am glad that you found the answer and that your son is improving.

[Smunkeemom]

armetta is right about the gluten challenge, it takes a long time, your kid WILL get very sick if they have celiac, then you have to do the blood test which has a high chance for being a false neg. in a child so young. ( can you tell I am against it? LOL)

If he is doing well and you are doing okay with the diet, I would tell the doctor that you don't want to gluten challenge him and that you are fine "not knowing" (even though you already do)

I personally. didn't see any good reason to make my kid sick, but you might have some (we all are different after all)

[jaybirdsmom]

Thanks for your answers!! My problem is that my DH is in denial about the celiacs. He says that it myight of been a virus!!! Just like the doctors said!! That makes me so angry just to think about it!! (we are separated he hasn't been too envolved) But when he is with my son I have to watch because he'll give him glutened food and the my poor little man has diarreha for days!!!

I have other people preatty much pressing for me to do the challenge ASAP but i do want to wait as much as possible because my son has currently a speech delay (he's a 9 mo old in speech) and i sincerly think that it happened because of the gluten!!

I also have an issue because my son was supposed to start day care,on a military base, (my DH is Military)and on this day care afterage 9 moths the meals are included on the price and they don't accept people bringing food from home. when i told them the diet he was on and the concerns I had with their meals they told me they would have to have a meeting with the doctors that have seen him and possibly have to train the staff if they see that they have to incorporate a different meal plan for him!! This will probably take a while so i have no child care and i have to work!! My friends paciens (sp?)is wearing out. I'm self emloyed so if I don't work I don't get paid!!

[mouse]

I understand why you need a firm diagnosis. Has he only been gluten-free for about a week or so. Call the doctor tomorrow and see if they can do an endoscopy on him ASAP. Then put him on gluten until then. I know he is so young, but his villi might show up with damage and then you get your diagnosis. As far as the speech, I have read on this forum that some children have delayed speech due to the Celiac. I am a 64 year old grandmother of a 18 year old and had never heard of Celiac until my diagnosis 28 months ago. I really don't know if being gluten-free for a week or so would scew the biopsies. They also need to take many biopsies from different areas of the small intestine. I am so sorry that your ex is not supportive, that does present problems. Maybe some parent of a young child will post answers that was in a similar situation. The weekend on the forum is quiet, but livens up during the week.

[kenyonsmommy]

I ahve a very similar story to yours my son was 28months when he was diagnosed, he started vomiting and losing weight at 23 months, all of the sudden. I had him in the dr about every week, for a few eeks, while my regular ped was on vacation, the other drs told me he had a stomach bug. so after almost 6 weeks of this, my own dr gave my son a reflux med, we had a upper Gi, which showed nothing. This was ok for about a month, then the vomiting started again. he consistently lost weight, he went from 28 to 24 pounds in 3 months. It was heartbreaking. By then my Ped referred us to a specialist at Strong hospital, who put my son through a cat scan, chest xrays countless bloodwork and finally an endoscopy. Finally we were done, diffinitively celiac.

I know that endoscopy is not the most fun for anyone, much less a small child, but I am glad we did it. We now know what is wrong, plus we know what the damage was. His villi were completely flat, he was starving.

after 4 weeks on the diet, he is 4 pounds heavier and as active as can be. We still have diarhea issues, but hopefully that will lessen as he heals.

I'm glad the diet is working for you, I'm not sure I would challenge it for long, but I would definatley insist on an endoscopy. It was quick and it gave a face to my sons problems. Good luck.

[Guest Robbin]

I'm not sure if this would be enough to convince everyone, but have you considered getting the gene test from enterolab.com? If he has a gluten intolerance gene, or a celiac gene plus all his symptoms and improvement on the diet, how could anyone argue with that? You wouldn't have to put him through so much (it is just a cotton swab to the inside of the mouth) I think it costs about $99.00. Whatever you decide, I wish you all the best.

[luvs2eat]

I was thinking that being gluten-free is just not that big a deal (once you get the hang of it), but if your son has not been definitely diagnosed and you are separated w/ a husband who doesn't agree w/ the whole gluten-free thing... a definitive diagnosis might be necessary.

I like the idea of a MEDIC ALERT bracelet for kids w/ celiac... it makes it much more "real" and serious and people (like separated, unbelieving fathers) pay attention and take it all seriouslyl.

[jaybirdsmom]

He's been on the diet for three month now but yesterday some friends of mine gave him some french fries and he has very watery diarreha and is again banging his head against anything hard (he was doing that when we wasn't on the gluten free diet).....He's been tested for hearing and the possibility of autisim but it was thrown out when that diet change stoped all that! He also is having ..and I don't know if this is a symptom or not but he's having like tremors when he wakes up....Let me explain! When he woke up form his nap this afternoon he was crying and he was trembling like he was cold. I grabed him and I changed his diaper and while in the diaper table he was pretty much in the same position he was in the crib and he was not moving to grab anything(which he usually does)but still trembling. I held him for a while then put him on the floor but still seemed a little disoriented and that concerns me a lot! We just saw a neurologist and he won't see him until next month but this might just be big enough to call it in tomorrow morning!!

[Guest Robbin]

I don't know if this is a possibility, but my oldest used to bang his head with toys, on furniture, etc. when he had fluid in his ears or an ear infection. I sure hope the poor fella feels better soon. You need to care for yourself too. I know how terribly hard it is emotionally when your child is sick.

[Hair Detective]

I would suggest researching Dr. Fine's stool test....it does not require going back on a gluten diet. I found the testing process very confusing...so I've spent quite a bit of time trying to figure it out.

The stool test showed gluten sensitivity and t-transglutaminase autoimmune response in my daughter who has alopecia. The problem from my perspective is that waiting to be diagnosed with celiac disease negates the opportunity to take action BEFORE there's villa damage. You can order the stool tests online and submit the tests to your insurance provider directly.

Open Original Shared Link

Love to hear the result if you do the test. And from my Newsletter, Inside Out, here's a summary on testing as I researched it.

Testing for Gluten Sensitivity and Celiac

When it was discovered in the 1940s that gluten was the cause of celiac disease, the best diagnostic test was to remove gluten from the diet and see if you got better. Then in 1950 a biopsy to detect damage to the villi in the intestine was developed and became the “gold standard”. In the 1970s, 80s and 90’s, new blood tests were developed to detect antibodies in the blood (IgG, IgA, t-transglutaminase) allowing doctors to diagnose individuals with celiac without an invasive biopsy.

But the blood tests had a problem. A positive blood test indicated that you had celiac, but a negative test result didn’t necessarily mean you were okay. In fact, the two blood tests commonly used to make a diagnosis are only accurate 59% of the time and, in the early stage of celiac disease, before damage to the intestine occurs, the tests only detect celiac 31% of the time. In the late 1990s, Dr. Kenneth Fine developed a stool test. The test has a higher accuracy for detecting celiac and gluten sensitivity, in addition to showing that celiac is just the tip of the iceberg of gluten induced diseases.

[jenvan]

https://www.celiac.com/st_prod.html?p_prodid=1281

I think this is a good article to read on the pros and cons of the challenge...

[Twister2]

Hi there, my daughter has also been sick for months and we FINALLY found the world best Peds GI. He STRONGLY advises against gluten challenges for diagnosis. Mainly because this can in fact, in some cases, cause an anaphlactic reaction or severe ilness. He feels this is not ethical to make a child suffer when other diagnostic procedures mainly an endoscopy can reveal the illness, (if done accurately). A doctor who is well educated on Celiac disease will suggest other methods of diagnosis. Also with regard to the gene typing, it can be an indication, but it should absolutely NOT be used as a diagnostic tool. All gene typing means is that the person is PREDISPOSED to Celiac disease, it does not mean that they have it. Our GI suggests this as a "last ditch effort" in diagnosis. Using gene typing as a diagnosis can change someones life and insurability later in life. Choose your doctor carefully, even if it means trying several out first, that is what I did and it has paid off for us!!

[TCA]

Bless your heart. I've been in a somewhat similar situation with diagnosing. My son's symptoms were similar, but he went through 2 biopsies over 2 years, both being negative. He also had inconclusive bloodwork. He was diagnosed as having toddler's diarhea, but only got worse. We finally tried the diet and it worked like a miracle. My in-laws were really doubtful of a diagnosis, so we did gene testing with Prometheus. He has both genes for celiac. The dr. said with his symptoms, improvement on the diet, and positive gene testing, he has celiac. This might be the way to go for you.

Was your son tested for an IgA deficiency too? Mine wasn't and I didn't know to ask for it at the time. If the IgA is deficient, it can skew the test results.

My daughter had no testing, long story, so I went gluten-free while nursing her. She improved immediately. It was amazing. We also did gene testing on her and she was positive on one gene.

Testing under 5 is so inconclusive. I would hate for you to go through all that and come up with negative results. The gene testing is not 100%, but if sympoms are present, most drs. will take it as proof of celiac. You don't have to tell your husband that it's not 100% if that would hurt your case. I'm not an advocate of lying, just protecting my kids!!!!

Good luck!

[ryebaby0]

Well, you certainly have a full plate to cope with! You are going to see all sorts of opinions about this, but in the end you need to decide what will work best for you. I agree that endoscopy is not as scary as it seems at first, but my son has had FOUR now and the first time I was a basket case. Blood tests can show false negatives, but that doesn't mean they will. I tend to think if it were me, I would want an "official" diagnosis to wave at the DH and school. Perhaps your doctor would consent to that without a gluten challenge. (My son was gluten-free for about three weeks before his first scope, and it was still massively positive. It was nearly a year before his blood tests came back normal)

Lesson one of being a celiac parent: don't let doctors, schools, daycares, or family intimidate you. You are now the authority on your child's behavior, symptoms, and diet. Your are his advocate. You are the wall between people's laziness and his health. Be firm, be polite, be cooperative, but don't be pushed around! Thousands of celiac children are in schools and daycares and all those staff are coping because somebody made them! You are our hero!

joanna

[mart]

He's been on the diet for three month now but yesterday some friends of mine gave him some french fries and he has very watery diarreha and is again banging his head against anything hard (he was doing that when we wasn't on the gluten free diet).....He's been tested for hearing and the possibility of autisim but it was thrown out when that diet change stoped all that! He also is having ..and I don't know if this is a symptom or not but he's having like tremors when he wakes up....Let me explain! When he woke up form his nap this afternoon he was crying and he was trembling like he was cold. I grabed him and I changed his diaper and while in the diaper table he was pretty much in the same position he was in the crib and he was not moving to grab anything(which he usually does)but still trembling. I held him for a while then put him on the floor but still seemed a little disoriented and that concerns me a lot! We just saw a neurologist and he won't see him until next month but this might just be big enough to call it in tomorrow morning!!

Hi. What a difficult situation you're facing, and I understand it. While my husband is very supportive, I can relate to others thinking you're nuts about your son's condition and not taking it seriously at all.

As for the trembling way your son awakens, it describes - to the "T" - the way my son used to wake up. I didn't know what it was then, and it happened often. After going gluten free, thank God it no longer happens!

My son was diagnosed through blood test and biopsy, so that part was easy for us, but I guess I'm just telling you about this to reassure you that it definitely sounds like your little one has celiac. My daughter has it too, and her blood test was "inconclusive." She was hospitalized several times a year for unexplained vomiting that would dehydrate her to the point she was unconscious once and we almost lost her. Amazing how many symptoms go away with the gluten free diet, isn't it?

Well, since you've seen such a wonderful turnaround for your son on this diet, it would be cruel to make him undergo a gluten challenge from my stand point, although I must agree that you do need a firm diagnosis in order to convince your husband and others around your son about the importance of his treatment. I would make an appointment to see his doctor ASAP and voice your concerns. I would tell him about his miraculous improvement on the diet, and then ask him to write a letter prescribing the diet. My doctor did this for us for our daughter's school, even though she had no firm diagnosis due to her inconclusive blood work. You know, the standard after diagnosis, up until last year, was to go on a gluten free diet for a year, then have a gluten challenge and yet another biopsy. Believe that? But even conservative doctors (like ours) are opting to forego that last gluten challenge. I mean, what is the point? The posters on this threat are correct. The diet is probably the best diagnostic tool for this disease.

I pray your situation will be resolved soon.

[Smunkeemom]

Okay, so I forgot about the whole school thing, I homeschool, so I don't really need a "solid" diagnosis for my oldest (and I have one for my youngest) I guess I was right earlier that there may be many reasons that I didn't think of.

[Guest nini]

you are in a tough situation, but if the GI Dr. is supportive of just keeping him on the diet, then do that. Get the Dr. to write a note dx'ing him with Gluten Intolerance and that he has to be 100% gluten free. You do not need to do a challenge or other testing for a Gluten Intolerance dx. This is what is on my daughter's chart. Her blood tests were negative, but her response to the diet was undeniable. I'm sorry your son's father is not being supportive of this. But you really need to find a way to convince him that by feeding your son gluten, he is harming him, and that dietary response IS the most valid diagnostic tool.

A nationally renowned Celiac expert that spoke at one of our local support group meetings said that if a patient is showing improvement on the diet, she will NEVER have them reintroduce gluten for the sake of a challenge or testing.

You be your son's best advocate and stick to your mommy instincts and absolutely insist that the Dr. support you in this. If the Dr. won't, then fire them and find a Dr. that will. The Dr. works for you... keep that in mind. You have seen the improvement in your son when he's off gluten, that is enough proof for me. Whether or not it's Celiac, Gluten Intolerance, Autism, or whatever, gluten has proven to be bad news for him... And if you feel you have to go through testing, keep in mind the testing is not as accurate as the medical community would like us to believe and while you can't get false positives, you can have false negatives. And be prepared that regardless of the test results, you are still going to be committed to keeping him gluten-free.

[wonkabar]

If your son has an issue with gluten, you'll know day one or two of a challenge. These doctors are out of their minds to ask a parent to do this to their kids. My son was on a gluten-free diet for ten days. (We KNOW that he's got MAJOR problems with gluten.) We were curious, though, as to how sensitive and how quickly he'd react to gluten. So, we gave him a small bowl of regular pasta and a small piece of birthday cake at my brother's house. WHAMO...for the next 3 days his poops were awful again and he was very irritable!! I would not put your son through the gluten challenge. Our "challenge" was one small meal. I shared this experience with our ped and his spin on it was that we'd obviously gotten an answer regarding gluten even though my son's labs were negative. (Thankfull, he's very supportive.) I discussed doing a gluten challenge with Zachary in the future and our concerns about it. His response was, "If it's not broken don't fix it." He agreed to calling Zachary's problems with gluten a Gluten Intolerance.

At first, I was very much about having an official Dx of Celiac. I think that's simply b/c society has trained us this way!! But, honestly, an official Dx doesn't make a bit of difference at this point. We're doing what's best for our son which is keeping him on a gluten-free diet. This is exactly what we'd be doing if we had the official Dx of Celiac Disease anyway. We are Zachary's greatest advocates. We eduated everybody about his issues with gluten. Our family, friends and pre-school have all been very supportive. Follow your mommy instincts and don't let anyone tell you otherwise. Would it help to convince your ex if your ped used the label Gluten Intolerance?? I hope things get better for you and your little guy soon. Good Luck!!

[mommida]

We were in the same position you are in. We tried the gluten challenge. My daughter ended up being hospitalized for dehydration. I stopped the challenge at that point and then genetic testing proved my daughter has two Celiac genes. We now have the diagnoses of "probable Celiac Disease". Schools do not want to deal with any such issues. You tell them NO GLUTEN and they will not let your child knowilngly have gluten. People that don't believe in celiac disease or gluten intolerance, see him get sick a few times after one bite of gluten will get the hint. No matter how hard you try, a child that age will definately have some gluten accidents in the near future.

You could try The book by Danna Korn, Raising Celiac Kids. It has a lot of insight into the entire situation.

L.

[Tony'sMom]

My son's inital bloodwork and biopsy were inconclusive but both genetic markers are positive. He was diagnosed with celiac and we started the diet.

Fast forward a couple of years and we did a gluten challange. Why? Because of the inconclusive test results. So we did a couple of months off the diet. Big mistake, in my opinion. My son started losing weight, got a bunch of cavaties, anemic, leg pain, etc. And of course he's still celiac so we put him through that for nothing.

If he's making progress and you don't need a "definitive" diagnosis then I wouldn't do it.

Good luck.