What To Do?

[chrrsn]

I am unsure if you are able to help me and the best that I can hope for is a little advice or a push in the right direction. I am a mother to two beautiful little girls. My four year old is the picture of health and is rarely ever sick. My youngest, however, is two and has been having digestive problems from approx. 6 months of age. She is very small for her age and is currently just 21 pounds. Victoria has constant diarrhea and upset stomach. She complains of a bad tummy and often has bowel movements up to 5 times a day. They are basically fatty diarrhea or colored water!

I had taken her to her pediatrician several times only to be told that it was completely normal for this to occur, although I have never had this problem with my older daughter, Katie. In August of this year, a new pediatrician was in town filling in for vacationing doctors and I brought Victoria to her and mentioned this problem to her when she noticed her poor weight gain- Victoria was only 18 lbs at this point. She ordered blood tests and a couple of weeks later she called us back to the office and told us that the blood tests showed that Celiacs Disease was present and referred us to a doctor in the Stollery Children's Hospital in Edmonton. I started Victoria on a gluten free diet and saw an almost immediate change, she seemed to have more energy, she enjoyed her meals more and the color in her cheeks was amazing.

We travelled with Victoria to Edmonton to see this doctor in October after waiting for what seemed forever to get an appointment-at this time Victoria had put on almost four pounds. Of course, I immediately got into trouble for starting Victoria on a gluten free diet without seeing this doctor first. He said that the blood test meant nothing and the poor weight gain may have been caused by 'a mother taking things out and adding things into a childs diet without knowing what she was doing'. Basically he felt that there was no concern and said just to put my husband and my own mind at rest he would do a biopsy of the bowel to see if Celiacs Disease was present. He arranged it for five weeks later on November 6th and told us to go home and put Victoria on a heavy gluten diet to ensure that the biopsy was conclusive.

Unfortunately, upon arriving home and trying to put Victoria on a gluten diet, I found that she was not interested in eating these foods anymore and we found it difficult to get her to eat any foods containing gluten. We went back to Edmonton in November for the biopsy and I told her doctor that she wouldn't eat very much gluten. After the biopsy upon speaking to her doctor he told us that he was certain that the results of the biopsy would be positive and if they weren't he agreed that there was a problem with Victoria and further investigation would be required. The biospy was performed and the results were inclusive. So her doctor arranged some allergy tests, telling me that he was now sure that the allergy test would reveal an allergy to wheat. Well the allergy tests revealed no allergy to wheat, a severe allergy to strawberries, and mild allergies to whole grain rice, soy, eggs and peanuts. Upon getting these results I got a call from Victoria's doctors Nurse telling me that he had reviewed the results and decided that we should remove all the foods that showed results in the allergy test from Victoria's diet and see what happens. She said that a dietician would contact us shortly to set up a diet, that was over three weeks ago. I started making all of Victoria's food from scratch putting in as many gluten containing foods that I could because we had been told that if this failed to work within three months, then we would try the biopsy again. In the meantime, he did not wish to see Victoria again for three months. The soy, eggs, whole grain rice and peanuts were removed from her diet and nothing happened. She still continued to have five bowel movements a day, she continued to be pale and sickly and generally unwell. Finally after consulting with our family physician after being unable to get a response from the doctors in Edmonton, I decided to put those other foods (e xcept the strawberries obviously) back into the diet and start her on a gluten-free diet again. The next day she had a semi-solid stool (one only), the following day the same thing happened and then for the last two days she has had one stool a day, one perfectly formed stool and her color is returning.

I guess, the question I have is, what does the inconclusive biopsy really mean? Obviously gluten is the problem for Victoria, are there any other problems or allergies that could be associated with this? What can I do to help my daughter get a better diagnosis or is there anything that I can do? Please, I am at my wits end. I don't know where to go to from here and what to do next. The gluten free diet is having great results for Victoria but inevitably, Victoria will need a diagnosis as to what her problem is. I just can't watch her suffer anymore. She screams at the sight of anyone in a white coat or anyone resembling a doctor...I just don't want to put her through testing that's not needed anymore.

[CarlaB]

It seems from your own "clinical" trials of changing her diet that she responds positively to the gluten-free diet. I would keep her on it. If she still has symptoms, then look for what else it could be, but if she gets better gluten-free, you have your answer.

The biopsies are known for having false negatives ... they can only rule in celiac, they can't rule it out.

[mommida]

Her reaction to the diet shows that she has a problem with gluten. You don't need a doctor's permission to be on a gluten free diet. If you are concerned with school, just tell them what happens when she eats gluten. The school does not want to deal with a kid having "D" and keep her as gluten free as possible.

L.

[lovemyboy]

HI

My little guy just turned three a couple weeks ago and when he was two only weighed 21lbs as well a year ago we put him on the diet against doctors recommondations and he has gained about five pounds and he has less bowel problems (was the oppostie though he was constipated) I have no regrets and dont' know if I'll ever bother getting the biopsy as the doctor here in Calgary said I would have to put him on gluten for six months minimum and from reading on here the biopsy really is unrealiable especially in young children. I'm in Calgary and the doctors here at least agree he is doing better on the diet and it won't harm him they didnt' try to force me to put him back on gluten we go back when he is five, of course unless there are problems.

[CantEvenEatRice]

It is just absolutely shocking what doctors do sometimes! I just cannot imagine why any doctor would ignore the dietary response? I understand that they want to rule out other problems but I think you definitely have figured out now that gluten is the problem. You do not need a specific Celiac diagnosis. You may never be able to get one until a lot of damage occurs. I would put her on the gluten free diet and then look for a doctor who supports your decision. Maybe someday the testing will be more accurate. Best of luck!

[lonewolf]

First of all, welcome to the forum. I hope you stick around and ask lots of questions - there are many people here who will be able to help you out a lot. I'm glad your little girl is feeling better and has gained weight.

I had taken her to her pediatrician several times only to be told that it was completely normal for this to occur, although I have never had this problem with my older daughter, Katie. In August of this year, a new pediatrician was in town filling in for vacationing doctors and I brought Victoria to her and mentioned this problem to her when she noticed her poor weight gain- Victoria was only 18 lbs at this point. She ordered blood tests and a couple of weeks later she called us back to the office and told us that the blood tests showed that Celiacs Disease was present and referred us to a doctor in the Stollery Children's Hospital in Edmonton. I started Victoria on a gluten free diet and saw an almost immediate change, she seemed to have more energy, she enjoyed her meals more and the color in her cheeks was amazing.

These ARE positive tests - many doctors consider positive bloodwork conclusive. Many people on here will verify this. The positive response to the diet is another positive test. Putting her back on gluten to get a positive biopsy simply means PURPOSELY DAMAGING her digestive tract (and maybe a few other body parts) just to get information that you really already have.

If the gluten free diet is working well and she doesn't continue to have problems, then you have found your answer.

[Fiddle-Faddle]

That doctor in Edmonton showed a shocking disregard for both Victoria's health and your own intelligence, as well as an equally shocking lack of knowledge. The biopsy was unnecessary, and, given her age and lack of gluten ingestion, totally pointless.

I would never go back to him.

Just out of curiosity, did Victoria ever react to strawberries before? If not, you might consider trying them again down the road (way down the road).

Good luck!

[rez]

Please know that you are not alone. I totally feel your pain and know EXACTLY what you are going through. My son Thomas has been sick for the past year with terrible stomach pain and recurrent apthous uclers (multiple canker sores). We have had a heck of a time with the medical system and I too am at my wits end. Here's my advice, take a deep breath and know you're doing the best for your child. It's hard when it's your child because you don't know exactly what they're feeling. Thomas was given the wrong blood test 5 months ago and we were told he was negative for Celiac. Then, after getting a second opinion, they ran the CORRECT blood test which showed up positive for Celiac. The problem is that he had been on a gluten free diet for 4 months when the test was run. It was only slightly positive and now we'll have to wait another month at least to be biopsied. The stystem stinks. Be thankful you have the positive bloodwork and go from there. They say the blood test may replace the diet some day. Also, find out what test exactly came back positive. If it is tTG or EMA, then I would say it's pretty certain she has Celiac. I know the other two aren't quite as specific to Celiac. Thomas had an elevated tTG. Also, find a support group. Those help a ton. The medical community is not up on Celiac like they should be. Channel your energy and frustration into publicity and awareness for this disease. Good luck and hang in there. I know it's so hard. Take comfort, again, in knowing you're not alone!

[Phyllis28]

Victoria knew best when she refused to eat gluten containing foods. I was diagnosed at the 28 years ago at the age of 21. No blood test ( I don't think any existed). No biopsy. Positive response to a gluten free diet was good enough.

I have been to various different doctors over the years. Not one has ever requested any proof other than my word that I have Celiac.

If you need a written diagnosis find a doctor who will base the diagnosis on the blood test and the positive response to a gluten free diet.

The most important thing is that Victoria is happy and feels well not the results of a biopsy.

[chrissy]

if she had a positive blood test at this age and positive results from going gluten free, i'd say she has celiac disease. i notice also that the biopsy was inconclusive and not negative. request copies of the blood work and the lab results for the biopsies-----you might want to have a record of them. after being gluten free for awhile, you can have her blood tested again and see if the antibody levels have dropped------that ought to be just as good as a biopsy.

[tarnalberry]

The dietary test, and challenge, are valid tests. Don't ignore them!

Looks like she needs to be gluten-free.

[shayesmom]

We travelled with Victoria to Edmonton to see this doctor in October after waiting for what seemed forever to get an appointment-at this time Victoria had put on almost four pounds. Of course, I immediately got into trouble for starting Victoria on a gluten free diet without seeing this doctor first. He said that the blood test meant nothing and the poor weight gain may have been caused by 'a mother taking things out and adding things into a childs diet without knowing what she was doing'.

This kind of attitude just KILLS me! I got the same kind of BS from my dd's doctors as well when I put her on the diet and she responded well.....AFTER she'd been poked, prodded and made miserable with all their pastas, butters, oils, breads and supplements to "fix" her weight gain problems. It's such a bunch of bull! It seems to me that your observations that accumulate from being with your dd 24/7 for YEARS is a bit more reliable than the 7 minutes they give you in office. Any doctor who would blow off a mother's observations like that deserves to be fired and to not have any more patients. Being arrogant does not make a good doctor. Perhaps if he paid more attention to REAL results and actually bothered listening....he might be able to look beyond his own ego long enough to realize that your visit to him was about your dd's health, not his overinflated ego!

I suppose it must be a bit embarassing though that a mother who "doesn't know what she is doing" gets faster and more positive results than he does with all of the fancy equipment and an arsenal of testing supplies at his disposal. You're a GENIUS as far as I'm concerned!! Keep up the good work and don't every let anyone that you aren't seeing what YOU ARE SEEING.

And since when did physical observation and measurable results such as weight gain become a "bad" thing that wasn't related to actual progress? My father's doctors were constantly watching his blood levels and running liver panels to make sure that he was doing "okay" with his Lipitor. Would you believe that with the multiple tests that they ran yearly over a period of over 10 years...they actually MISSED the fact that other levels were way off and didn't notice he had stage IV cancer (with a tumor the size of a softball in the liver)??? Their focus on those specific tests and their inability to lose the tunnel vision cost him his life. Do not let anyone tell you that what you are feeling and observing are invalid because they haven't "proven" it with tests. This is YOUR dd. You are her best advocate. As an obviously caring mother, YOU call the shots and make the decisions. The rest can go hang if they don't like the "unscientific" way you are doing things. I think you are doing a very fine job!

[GFBetsy]

This kind of attitude just KILLS me! I got the same kind of BS from my dd's doctors as well when I put her on the diet and she responded well.....AFTER she'd been poked, prodded and made miserable with all their pastas, butters, oils, breads and supplements to "fix" her weight gain problems. It's such a bunch of bull! It seems to me that your observations that accumulate from being with your dd 24/7 for YEARS is a bit more reliable than the 7 minutes they give you in office. Any doctor who would blow off a mother's observations like that deserves to be fired and to not have any more patients. Being arrogant does not make a good doctor. Perhaps if he paid more attention to REAL results and actually bothered listening....he might be able to look beyond his own ego long enough to realize that your visit to him was about your dd's health, not his overinflated ego!

I suppose it must be a bit embarassing though that a mother who "doesn't know what she is doing" gets faster and more positive results than he does with all of the fancy equipment and an arsenal of testing supplies at his disposal. You're a GENIUS as far as I'm concerned!! Keep up the good work and don't every let anyone that you aren't seeing what YOU ARE SEEING.

And since when did physical observation and measurable results such as weight gain become a "bad" thing that wasn't related to actual progress? My father's doctors were constantly watching his blood levels and running liver panels to make sure that he was doing "okay" with his Lipitor. Would you believe that with the multiple tests that they ran yearly over a period of over 10 years...they actually MISSED the fact that other levels were way off and didn't notice he had stage IV cancer (with a tumor the size of a softball in the liver)??? Their focus on those specific tests and their inability to lose the tunnel vision cost him his life. Do not let anyone tell you that what you are feeling and observing are invalid because they haven't "proven" it with tests. This is YOUR dd. You are her best advocate. As an obviously caring mother, YOU call the shots and make the decisions. The rest can go hang if they don't like the "unscientific" way you are doing things. I think you are doing a very fine job!

Ditto!

Keep it up . . . make sure that you are giving her a nicely balanced diet, including a gluten free vitamin, and don't worry about the doctors. Just because he thinks he knows everything doesn't mean he's right.

[Nic]

Hi, just to make you feel better, my son's blood work came back showing Celiac. The doc (gastro) felt the biopsy would prove Celiac. It did not. It wasn't even inconclusive, it was just "negative". Thank goodness my gastro. did not stop here and sent it (the biopsy) to Columbia University in NYC. The re-examined the biopsy and gave him a positive diagnosis. Not every lab is experienced enough with Celiac to give a proper diagnosis. If she is better on the gluten-free diet then that is what counts. In my opinion you are doing the right thing. No one knows a child better than their mother.

Nicole