Hi everyone - update on Camryn

[Camryn'sMommy]

Hi everyone, hope you are all doing well and had a good Thanksgiving.

Unfortunately Thanksgiving brought lots of food to our house that Camryn couldn't eat. And she tried to sneak food and she has been sick a lot since then. As soon as she eats something with gluten in it, she is sick within about 3 hours. She usually recovers pretty quickly. I've found that she isn't affected by microscopic amounts of gluten (like I don't have a separate gf toaster oven), but if she sneaks a small crumb of cake she will have a bad diaper.

She is telling me more and more often that something is "gluten free". She pointed to a bear in a book the other day and pointed to the apple he was eating and said "bear eats gluten free". It was cute, but my 2 1/2 year old baby shouldn't have to worry about these things. She knows that the french fries at McDonald's are not gluten free and she knows that she has to get Apple Dippers there instead. She says "french fries have gluten, Camryn eats Apple Slippers"...lol.

She went to her Pediatric GI Dr. last week. She was really happy with her progress and she needs to go back in 6 months for a check-up. As long as she doesn't get worse, she won't need additional testing. Her autoimmune tests came back normal - so that is good.

Hope everyone is feeling good :)

[JLH]

Great to hear from you. I'm so glad Camryn is doing well (other than Thanksgiving.) I've been wondering about her. Thanks very much for the update.

[tex]

Hi Camryn's Mom,

It's great to see an update. I've been wondering how Camryn is doing, and I'm sure a lot of other members have been wondering, too. The holidays are tough on everyone on a strict diet, but it's good to see that Camryn has healed sufficiently that her reactions are short, when she occasionally eats something that she shouldn't. It's probably a good thing that the reactions come so quickly after eating something containing gluten, since that will reinforce her perception of gluten, and why she needs to avoid it.

The fact that she already recognizes foods that contain gluten, and can name safe alternatives, is really inspiring, isn't it. In a few years, it will all be second nature to her. It's good to hear that she's doing so well. Hopefully, since the gluten sensitivity was discovered and treated at such a young age, (before any permanent damage occurred), she will never have any other autoimmune issues.

Thanks for the update.

Tex

[starfire]

It sounds like you are doing a WONDERFUL job with Camryn and I admire you so much. I know it isn't easy for either of you.

Love, Shirley

[Camryn'sMommy]

Thanks everyone. She has had a really good couple of days and I think all of the Thanksgiving oops have made their way out of her system. It is just amazing though how well this gf diet works. If she accidentally eats something with gluten she gets clumps of mucus in her diarrhea. If gluten is not eaten at all, the stools are formed with no mucus. I just can't believe this isn't more widely known among the medical community. Camryn's Dr. suggested writing her up as a case study. I would do it if it meant that it would help other kids/adults that have this disease.

[JLH]

That would be fantastic. I'm going to copy your post and give it to my GI at my Jan. appointment.

She did say that I could be her test patient..........

Somewhere, in my internet travels, I found a pediatric GI named Dr. Edwin Liu (corrected) who seems to have a clue. I'll try to find that info if I printed it or on the net. I have printed out a notebook full of info but haven't divided it up in categories in my notebook, yet.

[JLH]

http://jccglutenfree.googlepages.com/genetictesting

[tex]

Hi Camryn's Mom,

Yes, I agree, writing up a case study would be a great idea, and Camryn is a classic case, because she so clearly demonstrates the facts of the issue, (IOW, she's so responsive to treatment). When conventional medical thinking is so far off base, case studies are probably the best the way to begin steering that thinking in the right direction. Eventually, the GI docs will get up to speed on this, but it will probably take a number of eye-opening case studies, to get their attention.

Thanks for a great post.

Tex

[Dee]

Happy to hear that your little sweetheart is doing better!!
You are such a Good Mommy .....

Dee~~~`

[harvest_table]

It is just amazing though how well this gf diet works. If she accidentally eats something with gluten she gets clumps of mucus in her diarrhea. If gluten is not eaten at all, the stools are formed with no mucus. I just can't believe this isn't more widely known among the medical community. Camryn's Dr. suggested writing her up as a case study. I would do it if it meant that it would help other kids/adults that have this disease.

It's so great to hear Camryn is responding this well to her GF diet...pretty amazing huh? If her Dr. is interested in pursuing a case study that means he realizes he has learned something quite valuable from you.

Wheat/D
No Wheat/no D

Here is something interesting and inspiring I read recently and thought about Camryn, you and your family.

I saw a 4-year-old girl in practice this week, brought in by her parents. The mother did most of the talking. In the last year, the girl had developed chronic diarrhoea. The mother decided to keep a food diary and through this thought she had identified wheat as the cause of her daughter’s diarrhoea. She eliminated wheat from her daughter’s diet, and the diarrhoea resolved.

Meanwhile, the girl had been referred to a gastroenterologist. When they consulted him, he recommended that the girl be tested for coeliac disease (gluten sensitivity). The test came back negative, though there was some talk that because the child had not been eating wheat (wheat is the main gluten-containing food in the UK diet) at the time of the test, that the test might have missed the diagnosis (in other words, the test may have given a ‘false negative’ result).

The girl was referred by the gastroenterologist to a paediatric dietician. The mother gave the history again (wheat in the diet - diarrhoea, no wheat in the diet - no diarrhoea) and despite this, the dietician recommended a diet rich in grain including wheat. The child’s parents thought this was odd (given the history), but resolved that health professionals must know what they’re doing and went on to their daughter on the recommended diet. Loe and behold, the diarrhoea returned.

Not keen on the idea that she was knowingly feeding her daughter a diet that was clearly making her child sick, the mother matters into her own hands again and re-eliminated wheat from her daughter’s diet. Again the diarrhoea resolved.

After this, it was time to go back to see the gastroenterologist. The mother gave the story again, with the addendum that the dietician had recommended a diet which made her child sick, so she had reverted to the original diet and her child appeared to be well again. The gastroenterologist, instead of saying ‘thanks for doing my job for me’ berated this woman for being ‘irresponsible’ for taking her daughter’s diet and health into her own hands.

In a degree of desperation and confusion with ‘I’m a bad mother’ thoughts circulating in her head, the mother brought her to me to seek my advice. I pointed out that I’m not sure she needed my advice, as it was obvious (to me, at least) that she had handled her child’s health issue as logically and responsibly as any mother could.

She mentioned that part of the reason that she was unsure about whether she’d done the right thing is because she didn’t have a ‘scientific background’. I pointed out that both the doctor and dietician may be regarded as people with a scientific background, but look where that had got this mother and her daughter.

The fundamental problem here was that neither the doctor nor the dietician had listened to this child’s mother. She maintained to me she had given a very clear story to these people: wheat in the diet caused the child to have diarrhoea, while with no wheat in the diet the child was well. It’s not rocket science.

What is it, though, that causes health professionals to sometimes ignore what patients are telling them, even when it’s blindingly obvious the best thing to do is listen?

Some of the issue here, may relate to an inability to get out of one belief system and into another. If, for instance, someone erroneously believes that a diet rich in grain and wheat is healthy, then it can be a bit of a stretch for them put that to one side, even when sitting before them appears to be a classic exception to their ‘rule’.

Another issue that I think is all too common in medicine is the idea that we health professionals are the ones that know about health, and if someone encroaches on that we can feel like our position has been somewhat usurped. I, like some other practitioners, welcome suggestions from my patients. Not only is it an opportunity to learn, I’ve found they’re almost always right too.

Now just imagine for a moment what would have happened if this mother had, in the long term, taken the advice to feed her daughter the very food that is clearly provoking her diarrhoea? Not only do we have a sick child, but we now have a mother who may feel inadequate for ever doubting the opinion of the health professionals from whom she has sought advice. Not an ideal situation, at the root of which were a couple of health professionals who did a lot of talking but not a whole lot of listening. Fortunately, the mother in the end decided to do some selective deafness of her own.

There’s an addendum to this story I’d like to add. Near the end of the consultation the father of the child told me he had been appalled by the standard of medical care they had been offered (and rightly so, I think). He then recounted an interesting story: after the birth of their first daughter (the daughter with the wheat sensitivity was number two) the mother was quite unwell. She was extremely tired and lethargic, and was found to have some abnormal findings on her ECG (heart trace). The doctors were unable to find out what was wrong with her. The father, in desperation, ‘googled’ his wife’s symptoms and through this came up with a possible diagnosis of hypothyroidism (low thyroid function). He took the diagnosis to his wife’s doctors and asked them to test specifically for this condition. Sure enough, it turned out to be what was wrong with her. By the end of the consultation, I was beginning to wonder whether these parents in front of me had missed their vocations.

As I said, good healthcare is about many things, but I reckon an essential part of this is listening to and honouring our patients experiences and opinions. We health professionals ignore our patients at our, and our patients’, peril.

Full text here from Dr. Briffa

http://www.drbriffa.com/blog/2008/06/06 ... nts-peril/

I'm betting eliminating gluten at Camryns young age will ward off many other associated problems for her later in life.

GOOD JOB MOM!

Love,
Joanna

[JLH]

Thank you Joanna. My endocrinologist/internal med doc will be getting a copy of this as well as my GI. In my case, the GI listened to me and said I could be her test patient but my other doc wouldn't listen and tested me for CD.