Alright.. Give It To Me Straight.

[DLayman]

Ok give it to me straight. My little guy is in a bad way. He has had SEVERE diahrea since last Thursday. Took him to the regular doc today and he feels that it is not a virus this time around because a. no fever to speak of b. no one else got sick and c. the history of chronic loose stools and weight loss over the last year. . So here is the question I went to ask last week and then deleted feeling I was over analizing it..

What does a 'celiac crisis' consist of? I have heard many of you talking about a point in your life when you had a celiac crisis and it actually prompted the correct tests to be done.

At this point the poor little guy has lost three pounds this last week.. there goes the pound he gained in the last month.. he is now 24 pounds.. I mean good Lord if he looses another pound or two he will be the same weight as his 7 month old brother! The regular doc almost bit at ordering the blood test but is hesitant to step over the bounds of the GI doc. So A weight check in a week, and call to the GI.. in the mean time no milk, try OTC meds for diahrea and bananas.. and keep him hydrated. I am really begining to understand the frustration that you all talk about.. as if I wasn't frustrated before.

HELP!!!!

Denise

[lauradawn]

So am I to understand that he is not diagnosed Celiac right now????

That sounds awful. How old is he? It's really hard as a parent to know what to do, but if you feel like testings need to be done, I would push atleast one of the Dr's until he agrees.

I had many problems and still do with my little 2 year old twins. There were a number of occasions that I felt something else was wrong, or a serious consideration needed to be made, and the Dr's did not have the same sense of urgency.

It is so frustrating to not know, and your little sounds like he's in dire straights.

Hang in there,.... I hope it gets better soon.

Laura

[DLayman]

No he is not diagnosed. He had a endoscopy and that was negative. The GI doc takes that as proof of biblical proportion that he is not celiac and wouldn't even concider doing the blood test last week when we were at our follow up appt. So much changes in a week.. all the trouble and weight loss has happened in the interum. So I will get the weight check on Monday at the regular doc's office and then call the GI doc.

Denise

[lauradawn]

Im so sorry. Did your Dr give you any suggestions as to what it might be? Obviously it's not normal..!!

Keep us informed. I'll be thinking about you

[Guest aramgard]

Denise, My Celiac crisis came in the form of diarrhea so severe I lost 10 lbs in 4 days. It lasted six weeks and I lost 35 lbs althogether. I could not leave the house because of the diarrhea and was so weak that I could barely walk. I had severe muscle cramping and Immodium was not working at all, even the large doses the doctor told me to use. Many times children do not develop antibodies immediately and even though they have Celiac disease the jejunum may not yet show the problem. So-o if your child is so ill and you have $99 to spare why don't you try Enterolabs stool test on him and then try the gluten free diet. I cannot stand to see another person, child or adult, as sick as I was before I was diagnosed. It took them 53 years to diagnose me, because doctors do not know how to deal with this disease. I hope he feels better very soon. Shirley

[wildones]

I would find another GI doctor asap !

Where do you live ? Maybe someone here could suggest a good pediatic GI doctor. If you live in Colorado, I can highly recommend my kids' dr. He has office throughout Colorado and one in Wyoming and I think he travels to Nebraska occasionally too.

One of my boys had many negative biopsies and even a false negative blood test (because it was not the 5 part comprehensive test done by Prometheus and some other labs) . I don't even know if the tests were available back then @ 7 yrs ago. His other major GI problems- he had 70%+ of his small intestines removed as an infant- caused him to have so many endoscopies and biopsies. He wasn't diagnosed until years later because of the false negative results and because he had so many other reasons to have the symptoms he had.

A biopsy is not always going to be conclusive, and if you have to convince your GI doctor of that, get a new one !!! I think there is a list here on this board of drs who are recommended, listed by state.

Unfortunately, in order to get a definative diagnosis, you would need to have your child continue to eat gluten containing foods. I personally don't see the harm in going gluten free right now and seeing if that helps. UNLESS you want to get a definitive diagnosis, then DO NOT go gluten free until the tests have been done. The diet will not harm your child and could potentially be very helpful.

Why would your pediatrician be 'hesitant to step over the bounds of the GI doctor' Who is to say that if you are not comfortable with a specialist, that you can't 'step over their bounds' ? Specialist are NOT created equally and are NOT always right !

I would ask your doctor about testing w/ prometheus labs

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Good luck with finding some answers

[DLayman]

Lauradawn, the family doc does think that this is diet related, given the history etc.

Welda.. thanks that is what I was looking for, his diahrea has slowed down in frequency right now but it has not stopped. I expect he will get a pound back just for the mear fact of eating something but I don't expect any more than that.

Of course the GI doc would say.. look he gained a pound back.. he's ok.. UGH It may be time to end this get that stool test and get it and everything else to another doc. I do already have a reccomendation of another Ped GI nearby so I have back up.

Wildones.. did your son gain weight some what normally.. kind of stay with his own groove in the growth curve or was he failure to thrive?

I look at pictures of my son when he was a baby and he looked robust and had those pudgy little cheeks.. now he is pale and getting a little drawn in the face.. I can't get a pair of pants to stay up on him.. oh yeah he doesn't have that classic pot belly.. that also seems to be a nessesary symptom with this doc..

Just want an answer..

Denise

[lauradawn]

I would not think that whether or not a child has a potbelly would be a way to determine if he's celiac or not! I would definatley recommend a new DOC!!!!! You can present with the classic symptoms and you can have no symptoms and still be celiac. You can not tell just by how a person looks. I was just at our pediatrician GI and he said that the number of celiacs is outrageous. 1 in 140 people, and the large portion of those would appear healthy. Just as a side note he said that 1st degree relatives of diagnosed ones ie: siblings or children, the number is 1 in 20!!! That is astonishing!

Anyway,

Hope he gets better soon

[wildones]

Both of my boys, who both have celiac disease are very different. They are two of my triplets, and although not identical look very similar, but are so different in every other way. One of them had 70% + of his small intestines removed and his ileocecal valve and part of his colon removed as a newborn. He had so many other reasons to be malabsorbing, and had many false negative biopsies and blood tests prior to his celiac diagnosis. my other son had atypical presentattion of celaic. He had dermatological , neurological and fatigue problems. He is actually chubby and above average in height and weight. People w/ celiac can also be overweight because their bodies don't absorb enough of the needed nutrients, and so they are always starving, and have low energy.

Both have improved greatly on a gluten free diet. Don't waste your timetrying to convince your doctor to do the correct testing, but use your time finding the right doctor. A child can be gluten intolerant, and not yet have 'full-blown' celiac disease.

[DLayman]

Thanks Wild ones! I will most likely move on to one of the doctors reccomended to me by some local parents of celiac children. We were hoping to 'reform' this doctor but it seems he is not redeemable.. as I just found out that he has a teenager in his care with NO villi and is still not willing to say it is celiac..

GRRRR

We have also had a little interesting thing happen. We gave our son lactaid milk as the family doctor said to hold off on milk till the bad diahrea stopped, well we are not supposed to be giving him juice according to the GI so we got the lactaid.. presuming the lactace enzymes are blown out of his system by the diahrea.. low an behold.. formed BMs... Every time... they are still not quite the right color.. they are sort of like potter's clay.. but it sure is an improvement.. SO perhaps lactoce intolerance?

Don't know..

Denise

[wildones]

Often times a celiac patient can not tolerate milk products, until a gluten free diet is started, and the damage to the intestines has healed. After that has happened then sometimes, maybe even often ? milk products can be tolerated. I'm glad to hear your son his having some more normal stools. We get quite excited about that kind of thing here too

We have had daily stool discussions, especially about my son w/ short gut for 7-1/2 yrs now , I think we talk more about it than anyone we know.