extreme celiac & fructose intolerance

Hi smuff -

I'm so sorry about your daughter's struggles. It's miserable.

I also learned that when problems become as severe as mine were and your daughters are, there are generally several things going on and more and more, the medical industry is realizing that these malfunctions often have an underlying microbial infection component to them.

Unfortunately, even the best gastroenterologists are unhelpful. If you can find one who is an integrative specialist or a D.O. you're better off. But it is a long process of discovery and trial-and-error troubleshooting. But many of us here have been through the process and can help fill in some gaps.

Disrupted mechanics
I've not seen someone describe "severe contaminations" maybe semantics and we're talking about the same things but I would describe mine as severe digestive malfunctions and food sensitivities to many foods that included gluten and fructose. I spent the better part of two years on a highly restrictive diet (no dairy, no grains, no sugars, no simple carbs, no processed foods) and a liquid diet because of severe leaky gut and severe pain when digesting foods. It took a couple more years but I finally put the pieces together. We talk a lot about healing GI on this forum.

I later learned that my Lyme & Co was disrupting digestion mechanics and I wasn't production digestive acids... so the food wasn't getting broken down before it was moving through my digestive tract.

Leaky gut
I also had significant GI damage - the mucosal lining of the digestive tract is not only THE barrier (other than our skin) between the outside world and the stuff we consume and the inside of our body. And if food and toxins and fecal matter aren't moving through the body effectively, these toxins can seep through the mocusal lining an enter the blood stream and travel throughout the body. And if this barrier is damaged, the body can't absorb nutrients and meds/supplements very well. And if this barrier is damaged, the lesser quality foods that we're now consuming as a society and the hyper-processed grains make it difficult to digest them properly.

Autoimmune response
And most significantly, if this barrier is damaged, and these food particles get into the blood stream, the immune system encounters them as a foreign object and starts reacting to them - causing significant autoimmune responses and this is the primary reason for celiacs and even more common and difficult to diagnose is gluten sensitivities.

Yeast/fungal overgrowth
The other complication is the development of yeast/fungal overgrowth that is more common than most people realize - especially if a person has GI trouble, has an imbalanced gut biome or has used antibiotics. Here is a lot more info on y/f overgrowth and how it can cause or exacerbate leaky gut:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

We might be able to target specific issues if you can list her other sx and describe the reactions she has to gluten and fructose.

Hope this is helpful -

-p

Daughter has had times she's done antibiotics, but doctors get a bit testy when she specifies which particular one she can take. She's definitely learned to be her own advocate.

Wish there was a multi-vitamin she could take, but between her two food issues, we haven't been able to find one yet.

Celiac reactions are much more benign than fructose. With celiac, she gets real muzzy-headed and tired. Can morph into stomach pain if she doesn't catch it soon, like if she's made no change in her diet yet gets contaminated. . . like when the manufacturer of her "safe" bread changes one bit of their recipe. Grrr . . .

Fructose is horrible. Just the slightest bit and she's got horrible stomach pains, non-stop diarrhea, even vomiting. This lasts for well over a week, then calms to "only" feeling like she has the flu for another week or so.

Daughter is adopted and, as far as we've been able to trace, there is no history of any of this in either side of her birth families. I've heard that some researchers are thinking there might be a link between the celiac/fructose issues and childhood immunizations. Unfortunately, I've also learned to take anything I read/learn worth a grain of salt. These food issues don't seem to follow any pattern from person to person. My brother-in-law is celiac, and he's able to eat things my daughter has never be able to.

My son never had any immediate reactions when he ingested gluten...and that's not necessarily a good thing.

Because of this, he gets slack - especially at restaurants. He will order a dessert off the menu that has a graham cracker crust...and then eat the top of the desert.
One time, he ordered a Ceasar salad and requested 'no croutons'. It came with the croutons anyway...and he just picked them off.
He wouldn't want to make a 'fuss' and ask for another one to be made.

He lives on his own...nothing I can do about it now.

If he got a bad stomach ache - it would most likely deter him from being so slack about it.

He does get routine blood work - to check the gluten antibodies and also his ferretin levels. (at least!)

Multivitamins are generally packed with the cheapest ingredients and fillers so they're best avoided. Better to get single-source vitamins.

Most people with GI issues, sx, all these "boutique" diagnoses that often have the same cause, and GI damage and food issues - are not experiencing these problems because of genes. There are so many causes from modern life, it's not at all surprising that most people are ill.

In some ways, that's good because for most people because they CAN heal their GI.

-p

Thanks, astroman. I'll go do some research this evening. Every little bit of information definitely helps.