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Worriedtodeath

Biopsy Is Negative Ugh!

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UGH UGH UGH WHere's the trantum throwing smiley??? Yes I knew the results could come back neg along with the blood work since she's 19 months old but still!!! :angry:

But now the ped gi is like well everything we could possibly look at has come back normal so she must be normal. So much for the knowledgable dr who seemed so "cutting edge" Not even a sub clinical dx despite blood work that went up after doing the gluten challenge though still nowhere near positive. UGH UGH UGH UGH I've got a call into her ped who hopefully will take a different angle since she too seemed inclined to before the biopsy.

No wonder gluten sensitivity is unheard and Celiac is so misdiagnosed or not dx at all. When your child isn't growing, crapping a thousand times a day and responds beautifully gluten free......... what the @&#&@&# do you think it is?????? We can make a "personal choice" to remove gluten if that seems to help but testing says that isn't the problem. Well all the other test say the same thing!!! Nothing is the problem. She's normal the picture perfect of health. IF your definiton of health is runny liquid green pea soup coming of your rear end and not growing. I swear if she was one year older they would have said "she's stressed!" THat's what they tell me whenever I complain. But at her age I don't think he would dare say that to me.

Why are drs so unwilling to say gluten is your problem!!!!

I know.. I'm preaching to the choir here but I had to preach to somebody

Rant over

Stacie

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I understand your frustration!

My child was around that age was not growing either and responded to a gluten free, dairy free diet. The results of the diet change were very hard to ignore. I chose NOT to do any invasive procedures to PROVE this. IMO it doesn't take a dr diagnosis to tell me that he does better not eating gluten.

I did do a test through Enterolab that showed he had gluten antibodies. I chose to do this on my own knowing how hard it is to get a diagnosis through a regular MD.

The reason for his gluten intolerance? That is still yet to be discovered. I don't feel he is celiac nor do I feel I am. (I had a bought of intolerance myself). Mine and his intolerance were brought on by candida overgrowth in the gut and heavy metal toxicity. He most likely got this from me through pregnancy and breastfeeding.

We are both doing much better by treating those issues although we are not done.

I am of the thought that a lot of "celiacs" actually can have other underlying issues as to why their bodies is reacting to gluten and other foods.

Mercury for instance (found in fish, vaccines, air, water) damages the enzymes necessary for gluten and dairy digestion. These being the 2 biggies when it comes to sensitivities because they are the hardest to digest.

For me the dybosis in the gut caused leaky gut and led to many food sensitivities. Now that I have healed leaky gut and replenished with good probiotics and I am able to handle some gluten. Once I get the metals out of my body I feel I will be back to normal.

Just another way of thinking......

April

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Hi April!

How do you test or find out if that's the problem? I'm pretty sure non of that has been considered since she presented so classic for Celiac. This started when she went beyond basic food and moved into wheat stuff around 9-12 month age. Unless that stuff is in the battery of blood work performed when they are searching for why your child didn't grow. I don't mind so much not being dx with Celiac as not being diagnosed with something as the problem. Something is causing it and I would like to know beyond a shadow of a doubt it is the actual ingesting of gluten not something else that is causing her to not handle gluten. Then that means there is an underlying problem not fixed. Does that make sense? I don't want to come up in few years and wonder why something else has come up to find it is a smyptom of some other "thing" not caught. I just want to say my baby has xxxx and it caused this xxxxx not we don't have any reason why she can't eat gluten just that if she does she doesn't grow and craps all the time.

I know Celiac in and of itself can be elusive since she could be at the beginning of the disease and not at the end. I would just like something concrete. :(

Stacie

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You could have her tested by Enterolab, then at least you would also know her genes.

One of my granddaughters (now 18 months, at time of testing 15 months) had five complete blowouts a day, all the way up her back. A naturopathic doctor tested her, and found her being intolerant to all gluten grains, but she also had this bacteria in her gut that didn't belong there. She was on antibiotics for weeks before that was fixed.

Now that her bacteria balance in her gut is restored (she also took probiotics, of course) and she is gluten-free, she is having normal bowel movements for the first time since she started solids.

So, she is gluten intolerant, but she also had another problem. Just being gluten-free wasn't enough to fix her.

In our family the gluten intolerance is obviously genetic. My grandmother died of stomach cancer when my mother was twenty (I never met her), my mother had all the same symptoms as me and died of liver cancer at the age of 66, I've been sick from the age of three. My sister and some of my brothers are gluten intolerant, my niece has officially been diagnosed with celiac disease (and some others have problems), and all my five children and six of my eight grandchildren are obviously gluten intolerant.

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I hear your frustration, we just went through the same thing with my son. He was off gluten for 5 months last year, he did great, growing and gaining weight, and almost all of his symptoms disappeared.

Then we put him back on it for a gluten challenge and not even 24hrs later he had loose stools, not long after he started with rashes again and last but not least he started having stomach aches and woke at night again.

He had bloodwork done 3 times all came back negative but he is IGA defient, so no suprise there. We then went ahead and had a scope done with biopsies and it also came back negative.

The GI we saw then just said in adults we call it IBS and it's normal for some toddlers to have. His reasoning why my son does better on a gluten free diet were that he gets more fiber. Than why does he get sick with the smallest amount of gluten if it's just the fiber that is supposeably helping him :rolleyes: .

I went ahead and did the gene testing panel from Enterolab and come to find out that he has both celiac genes, now tell me again that gluten isn't his issue. He does certainly have other food allergies/intolerances as well, including soy and dairy.

Have you ever thought about doing the gene testing and gluten sensitivity test through enterolab? It is definitly worth it and I'm glad I went ahead as I didn't know he was reacting to soy.

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I absolutely HATE it when docs say ibs is "normal". IBS is always a symptom of an underlying problem and is NOT normal. That is my rant for the day. :)

Anyway, I had my son tested throught enterolab, but that does not get to the bottom of it. Your daughter will obviously show signs of antibodies to gluten because she has problems digesting it.

To get to the bottom of it I would suggest an ND, naturpathic doctor. Like Ursamajor said, could be some kind of gut imbalance in bacteria, could be candida. They can run an upper GI panel and try and figure some of this out. They will help you figure out what supplements to give her that will replenish the good bacteria if that is the case. I have gotten VERY far by using and ND. Also, the ND ran a urinalysis on my son that showed high levels of arsenic, lead, cadmium, bismuth, tunsten and other metals. This was a non-provoked challenge since he was so young. This is what lead me to getting his older sister tested and now me.

Over the summer the kids did a gentle chelation protocol that helped remove some of the toxic burdens. We will do this over the next few summers and retest. Once the toxic burdens are removed the body can start to function normally again.

Here are some sites to check out in the meantime. http://www.gdx.net/home/ , www.wholeapproach.com , www.diagnostechs.com. I have many more but that will get you started researching some different testing options.

What city/state are you in? If you don't mind posting. :)

April

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I absolutely HATE it when docs say ibs is "normal". IBS is always a symptom of an underlying problem and is NOT normal. That is my rant for the day. :)

I absolutely agree on this one. I just kind of gave the doctor a look of disbelieve.

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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