Hi

My eldest daughter who is 4 has always had problems with her bowels, the health visitor suggested it might be toddler tummy and that she would eventually grow out of it. She didn't so a couple of months ago, after diarrhea (sometimes explosive) every day and a supper bloated tummy at bedtime every night, I decided to cut wheat, gluten and milk out of her diet. There was a great change in her she gained weight within 4 weeks of being on the diet, her moods changed, she was concentrating, and her stools had returned to normal. A week ago we finally got our appointment through to see a peadiatrician who recommended to go back on her normal diet for 4 weeks so that she could have a blood test to confirm what was causing the intolerance. She had only been on the W/G/L free diet for 6 weeks so we decided to start feeding her normal bread etc. straight away. The problem (or not) is that after 3 days on a normal diet she's fine (no diarrhea, stomach bloating, etc), so did I jump the gun and misdiagnosed her or does it take a while for her symptoms to return?

Sometimes it takes a while for symptoms to return, sometimes they are delayed, and sometimes you will have different symptoms altogether (like tantrums, moodiness etc., rather than digestive problems).

After being gluten-free for six weeks, being back on gluten for four weeks might still produce false negatives. Kids heal fast and get better very quickly, but it takes quite a while for damage to build up again. Unless she eats a normal diet for at least three to six months, false negatives on both blood work and biopsy are probable.

I don't believe you jumped the gun at all. She had an amazing response to being put on the diet. It sounds like you got a 'new kid'! And she was growing, too. What else could have been the problem?

The diet trial is the most valid test in young children. The blood work and biopsy are notoriously unreliable in diagnosing children under six at the best of times. With your daughter having been on the gluten-free diet for six weeks, even with a four week gluten challenge, false negatives will be even more likely.

Gluten challenges after having recovered already are a terrible idea. Everything points towards your daughter having celiac disease. That she wasn't growing indicates severe villi damage. Her villi have likely mostly healed by now (possibly even completely). In order to get a positive blood test, her villi will have to be pretty much completely destroyed again. What sense does it make?

There is no way I would advocate making a child really ill again after having recovered so well, just for tests. I absolutely cannot understand why doctors want to push for that. Why not test her with Enterolab instead? Their tests are still accurate up to a year after going gluten-free, no gluten challenge required.

I don't think you jumped the gun. You did what you thought was right for your daughter at the time. Some children just have bowel symptoms without it being Celiac. If she is on the normal diet and doing well, let her have it and then do the testing. What harm can it do. (I know alot of people won't agree with me on that). But if your daughter doesn't have celiac and it could be just something simple with her bowels or maybe she had gastritis, ( it can last a while in little ones and give them diarrhea very bad). Her mood might have changed a little better because she wasn't have the tummy ache any more (meaning you cut out things that could effect her if it was a little bug or irritation).Let her do the test, because if she is fine, she won't have to be on this diet. Good luck in whatever you choose (I don't mean to offend anyone,) but when it all comes down to it, ultimately it is the parents choice on how their child eats and the medical field is the one who makes the diagnosis. Just remember that children under 6 usually have a false/positive result with test, unless he/she is showing classic symptoms ie: failure to thrive, etc.
Good Luck from an experienced mom of a 22 year old and 7 year old, who I don't want to have Celiac like me, because it aint fun.

What harm can it do? Oh, only possibly do irreversible damage (plus trigger other autoimmune diseases, like type 1 diabetes), I guess that won't matter, right? If it comes to who has more experience raising kids, I have four grown kids, ages 28, 26, 24, 22, and a 16 year old, as well as eight grandchildren (a ninth being due any moment).

Apparently, there WAS failure to thrive! If a kid is not growing and not doing well in every respect, that is considered failure to thrive.

As I said, Enterolab will test for gluten and dairy intolerance as well as for the celiac disease or gluten sensitive genes, WITHOUT having to risk making the kid really sick again.

Yes, parents can make the choice of what to feed their kids. But to wait for doctors to diagnose or not diagnose is usually a futile wait, as too many of them are completely ignorant of celiac disease. For the doctor to say that four weeks of eating gluten will be enough for an accurate test result after being gluten-free for six weeks, shows this doctor's ignorance already. Why trust him? I wouldn't.

And finally diagnosed, did you have your kids tested? Because despite you not wanting them to have celiac disease (and who would), they may have it anyway, since it is genetic. All close relatives of somebody with celiac disease should be tested.

thanks for the reply. Yes it's come back 3 explosive stools yesterday in the space of 2 hours and a very hyperactive/moody unable to concentrate on one thing child. I do feel really sorry for her, but we've got to get to the bottom of this (pardon the pun). Will keep a diary of her stools and have decided to switch her to dairy, wheat and gluten free once test is carried out regardless of the outcome. Thanks again

Hi again

thanks for the reply, we can't get her tested through enterolab (sounds wonderful though) because we live in England and it isn't available here. We do have a new spot test but it is not approved by doctors/NHS and also recommends at least 4 weeks with a normal diet for detection. The peadiatrician we saw suggested a milk protein allergy (not lactose) because of the ammount of mucous in her stool (sometimes she has explosive mucous (no stools)). We've got 3 weeks left eill let you know the outcome.


thanks

pcsv2002

Enterolab tests world wide. The only problem would be that you would have to send the samples back by overnight courier at your own cost, which would undoubtedly be very expensive. It already cost me over $80.00 from Canada, and it would be more from overseas.

Yes, gluten WILL cause mucous in stools! Of course, so can dairy.

As said before, it is highly unlikely that four weeks back on gluten will result in accurate tests. Are you sure you want to make your daughter that sick for nothing? I was not exaggerating when I said that a gluten challenge can trigger other autoimmune diseases or cause irreversible damage.

You are purposely destroying your daughter's villi again, after they had healed and she was well. She has no choice in the matter, as you and the doctor are forcing her to eat gluten. Would she choose to be made really sick again if you would ask her? I doubt it.

If you will put her back on a gluten-free, dairy free diet after testing, no matter the outcome, because it is obvious that gluten is the problem, why not just feed her gluten-free and let her be well?

You might want to call the doctor and tell him what is happening, that she has many explosive stools a day again and that she is back to being as sick as before. Many doctors will consider that enough evidence for a diagnosis.

I am in Europe too, and here we need a proper diagnosis with a biopsy. This also has to do with money from the government for gluten-free food and the school sytem and food at school etc. Even relatives want a proper diagnosis or they just feed the kid gluten to test her or something like that.

The enterolab test results would not be accepted by doctors here for a celiac diagnosis, only for a benign gluten intolerance (they think gluten intolerance is benign but it is just the same as celiac, really)

My DD2 went back on gluten for some weeks by her own choice to get a diagnosis. She had been ill for many years and misdiagnosed.

I really think you should talk to your doctor about this, and one needs to eat a lot of gluten to get a proper diagnosis.
There is an over-the counter blood test which is the same as the hospital Ttg test. If you want to, you can try it to see if it is positive. Then the tests done at the doctor will also be positive and it is time for an endoscopy.
It may take 6 weeks or longer to do enough damage to the villi so the tests are positive.

nora

I completely understand the dilemma. Here most doctors won't accept Enterolab either. On the other hand, they don't know much about celiac disease anyway, so why trust them to begin with? I had my daughter diagnosed by Enterolab after she had a negative blood test. She is now gluten-free and so much healthier, no more diarrhea/ constipation or stomach aches, and her mood is so much better. That is all I need, I couldn't care less what anybody else thinks, including doctors.

Any family who wouldn't honor the gluten-free diet of my children or grandchildren won't be visited, their loss. Fortunately, we don't have family members who are like that, but I know that many people do.

I also know that in Europe you can get gluten-free food prescribed by the doctor as if it is medicine if you have the 'official' diagnosis with positive biopsy. But I think losing that money is better than losing the health of your child (or the kid dead, which is a possibility, of course).

It could also take more than three months for the villi to be completely destroyed again for a positive biopsy, possibly even a year or more. Any doctor ordering that should be thrown in jail for torture, as far as I am concerned.

this is why I don't like to put my opinion on these boards. It doesn't come
down to who has more experience in raising kids,(just wanted her to know
that I have older children other than a four year old) that is why I put it
in parenthesis that I would probably catch some crap about my response.

I was under the impression that this board is used for people to look for opinions and
get advise and not to bully the person looking for advice and have them think they
are doing something wrong. Not all of us parent the same and will have to
try what we think is best for our children.
Whether or not we use the advise is simply up to us.

Yes, I do have my children tested every year and my older siblings get
tested as well, even their children too. When I was giving my response, I
was giving it with the idea that she is seeing a gastroenterologist who
knows about Celiac disease. I do know that there are many docs out there
who don't know about it. In addition, it is up to unfortunately sometimes
alert the docs to stuff. I went under the assumption that this doc does.

Sorry about coming across as abrasive today, I have family issues happening and I am in a crappy mood.

I misinterpreted your saying that you have older children as in, that you know more than me, since you have older kids.

Obviously, this lady's doctor doesn't know much about celiac disease, if he thinks that being back on gluten for four weeks after being off it for six will be enough for accurate testing. I guess I get very upset when doctors first tell people to try the gluten-free diet, and then, after the kid gets better, want them back on gluten to prove what has already been proven, namely, that gluten is poison to the kid.

They should do the testing first, while the child is still eating gluten, rather than letting the kid heal and then purposely making them sick again!

Anyway, the doctor should be informed of how ill the little girl is getting again. Diarrhea can be dangerous, especially in young children. I hope no doctor would purposely want to make a kid have diarrhea for weeks just for a test.

If your childs symptoms have returned you have a positive result on the challenge. You do need to contact that doctor immediately and let him know how violent her reaction was. A doctor that is interested in more than the money from the scope will likely give her the diagnosis based on the result of the challenge, and then stop the challenge. If he doesn't and orders you to continue poisoning her then IMHO you need to record record everything, every symptom and every bite of food. Make notes of your phone calls about the violent reaction and their insistance that you continue. That way if she ends up with permanent damage you have started the process she would need for SSI if the damage turns out to be not resolvable or the malpractice suit if the worst senerio happens (unlikely but as an adult the gluten challenge almost killed me).
The choice to keep her on the challenge is yours not the doctors. If she has had a positive blood test that is diagnostic in itself. The chance that her panel was a false positive with her reaction is a real, real slight one. That is extremely rare. In this instance if she has a postive blood test she is celiac or gluten intoelrant period.
False positives on blood panels are extremely rare, and in many instances when it is decided that the panel was a false positive is when a biopsy has been done and not found total villi destruction. Many times either the damage is missed or the disease has not progressed far enough yet. IMHO if one has a positive blood test that is conclusive. Especially when dietary response is as strong as this childs.

I believe the point is that she is trying get a positive blood test.

I doubt seriously that she is being treated by a money grubbing doctor in England. She is probably seeing a doctor provided by the government. Therefore, I doubt that you can sue that doctor for following medical guidelines. I understand they go pretty much by the book there, esp. since they provide benefits for people with celiac disease.

I don't know how much leaway the doctors have in diagnosing celiac without the proper tests, I doubt that they have any. That doesn't mean your doctor is ignorant, he is working within the system, which he has an obligation to do.

The doctors in the US don't have that much leaway either when it comes to celiac disease. Without objective evidence they can call it gluten intolerance, but not celiac disease without the risk of someone, ie, insurance company or other physcian challenging the diagnosis.

Are you keeping your daughter dairy free while you do the gluten challenge?

I would also call the doctor and let him know that she is having the symptoms she is having.

The doctors here have some leeway, my daughter who went back on gluten got an official diagnosis based on response despite negative blood tests and biopsy. But, the doctor doing the biopsy called on the others there to show them what an abnormal intestine looked like. They only took two samples and only looked at one sample. The doctor who gave her the diagnosis said some pathologists are useless.

nora

As a person who was seriously damaged by doctor's relying on blood tests for diagnosis I do tend to get a bit emotional about the issue, I apoligize if it seemed that way.

There are up to 30% of celiacs who do not show up on conventional blood testing. Also in children even those who will show up later in life are often a false negative. This is one reason why countries that are celiac savvy and screen everyone do it at around age 5 and then again after puberty. Even in children that are 'asymptomatic'.

The system needs to change, there is at present very little education on celiac and it's impact in medical schools. Many GI's in the US do not even realize that there is a neurological component of the disease for many of us. This neurological component can effect a lot, mood, balance, learning, memory etc. for a long time in some before GI disease becomes apparent.

I suggested making note of her symptoms for many reasons. One is that many doctors may think that a parent is exaggerating symptoms or there can be a misunderstanding of severity. For example.. "I had a bad bout of D yesterday" for one person could mean they had a couple of cramps, evacuated and then was fine, for another the same statement may mean that they had 8 hours of gut wrenching pain, shakes and sweating and felt like a truck hit them the next day. In this day and age all doctors are rushed and having the full effects of the glutening during the challenge on paper may help the doctor decide whether to quit the challenge and diagnose. Perhaps even a short video clip or two might help.

We need to get the medical community to stop making us half dead for the sake of a diagnosis. I realize they have there regs but for some of us the challenge is torture and can be extremely dangerous. And far to few doctors tell us to contact them if the challenge has severe effects.

Hello everyone, didn't think my question would spark up so many disagreements. Firstly here in England when you have a medical problem you go to your medical practitioner (a GP) who may or may not be able to see you the same day he then refers you to a specialist in my daughters case a pediatrician .If the availability to see someone on a private basis is there it is offered to you however, you will see the same consultants/pediatricians on a free basis, you will only see them quicker (normal waiting time for appointment is 6 weeks). The option of going private wasn't given to me or I would have taken it, and my GP suggested keeping her of the foods that were bothering her stomach which we did and kept food and stool diaries, the pediatrician wasn't bothered by this (didn't even read them). If we want our daughter diagnosed she has to go onto a normal diet so they can take the blood samples. She is back on a normal diet and yes the sysmptoms have returned, everyone who has contact with her (preschool, swimming instructor, etc) is aware of this and also keeping an eye on her. My husband and I were very impressed with the gluten and dairy free diet and the effect it had on my daughter, that we are happy to return to this once the 6 week period is over (we've received our appointment through the post today and it will be 6 weeks by the time she has her blood and stool tests). Before you say anything I know it requires 3 months but its a chance we are willing to take. We love our daughter deeply and am appalled that anyone would suggest we are doing this on purpose to harm her etc. If I wanted to form my own diagnosis I would have not even bothered taking her to the GP.

thanks for all the replies

pcsv2002

Nobody was suggesting that you are purposely trying to harm your daughter. However, through putting her back on gluten you ARE destroying her villi again, making her sick. Which could cause permanent damage to her.

It is through the ignorance of your pediatrician who told you to try her on the diet before testing that you even have this dilemma.

Have you called her pediatrician to tell him how badly she is reacting to being back on gluten?

good luck on your results and I hope you find your answers. I will probably catch crap for this, but I am glad your are going this root and you can get a diagnosis. This way if it is Celiac, you are all set and can train her and yourself and family how she can live with this for the rest of her life. If it is a food allergy, for example: Dairy, than you can work with that too. I have a girlfriend who moved to england two years ago to marry a lovely man and she has the universal health care, just recently had a baby and she has to follow the guidelines. Which as we found out, compared to over here in US they are different. I completly understand. Let us know your results. Hopefully everything will be good for her.

Hi, I was off gluten before testing too and that is why I have no official diagnosis. I was back on gluten just 5 weeks before the biopsy.
Now in hindsight, as the more severe symptoms did not return util the 6 weeks bak on gluten, I think they should not have dismissed me altogether then. We should probably have continued with testing.


nora