Re: Negative biopsy, so what to I do now?

June 8, 2010

Hi Carina,

I'm learning about something called Eosinophilic disorders, that can present in

the esophagus or the gut. I'd suggest googling eosinophilic gastroenteritis, and

seeing if the description fits your symptoms. You could ask your doctors about

it as well.

Good luck!

>

> My initial TTG IGG/IGA levels were called " early " by one gastroenterologist,

> " mild " by another, and Dr. Fasano called them " marginal " when he briefly

> looked at them at the Stanford conference. Four months of very strict

> gluten-free diet produced exactly the same levels as when I'd started and

> only modest change in physical symptoms. I also continued to have harsh

> symptoms from various gluten free products including GF Chex, ketchup, white

> rice, orange juice, etc. Despite the lack of response to GF diet, and the

> inconsistencies, the doctors nevertheless kept assuring me that it had to be

> celiac.

>

> So I did a 5 month gluten challenge, just in case the GF diet had done any

> healing whatsoever (Dr. Fasano suggested it likely hadn't). Now the biopsy

> has come back negative/normal, despite 4 doctors' confident predictions. A

> part of me thinks " thank goodness! " , but it's tempered by knowing I've been

> sick for 14 months and there are still no answers.

>

> My first question is, does anyone have a recommendation for a bay area

> pathologist who is especially experienced in reading celiac biopsies? That

> is, not just a good pathologist generally? From what I've read, that

> matters, especially if the doctors' previous assessment was in fact correct

> that this is celiac being caught very early. Maybe it takes a keen eye to

> spot damage at this point...? So I'm wondering about getting a second

> opinion.

>

> The second question is, any ideas of what to make my next step? Lactose

> intolerance and IBS are the alternate conclusions that have been previously

> suggested. Lactose is clearly causing problems, but definitely not all of

> them; and it's always been a poor fit with IBS criteria (e.g. no symptom

> relief from defecation). Tests for gallstones and ulcer ruled those out

> early. My doctor says his allergist colleague recommended against allergy

> testing, that there's too little to learn from it and basically not

> worthwhile in their opinion. In fairness, it does seems pretty unlikely

> that I'd have developed several food allergies all at once, after going

> almost 4 decades with none. But, I don't know, maybe that's what happens?

>

> I'd really be grateful for this group's knowledgeable and experienced

> suggestions. Surely there are others who've run up against the problem of

> diagnostic ambiguity.

>

> Thank you!!

>

> -Carina

>

June 10, 2010

Thank you. I was not in fact aware that all those foods have sugars in common! Whoa. I've given the same list to doctors over and over and they've never commented on it. Just brushed it off, saying that I must be wrong about doing the gluten free diet. <eyeroll> That gives me a good conversation to start with them

I was definitely eating a lot of gluten. Shredded wheat for breakfast, sandwich or something with soy sauce for lunch, pasta for dinner, baking on the weekend. Wheat was a featured player in virtually every meal. Barley malt was very common as well. When I cleaned out fridge and pantry for the GF diet, the majority of previous staples were gone.

They tested for vitamin D levels, but not other vitamins as far as I know. Sounds like there's a whole bunch of blood tests that'd be worthwhile to consider. Will look into all of these and bring them up with my doctor.

On Tue, Jun 8, 2010 at 11:26 PM, Pam Newbury <pknewbury@...> wrote:

Carina,

Sounds very confusing for you. I haven’t heard of

anything like this, but a few ideas come to mind; unfortunately mostly more

questions rather than answers, but maybe something here will resonate.

First, have you ever tried a fast? If so, did you feel

better when you weren’t eating anything at all? What happened when you

reintroduced food? If not, you might consider a fast (you should consult

a doctor first, especially if you are very sick) or at least a paleo diet for a

short while, mainly to see if the problem is really food related, and then to

reintroduce foods one at a time to try to determine what allergies you may

have.

Second, all the foods you mentioned reacting to have high sugar

contents. Have you ever considered insulin resistance or fructose

intolerance (or fructose malabsorption)? (wasn’t there a thread on

that on this list recently? Anyone remember that?)

Third, how much gluten were you actually eating prior to the

initial blood tests and biopsy? Perhaps you are very sensitive and were not

eating much gluten before the tests just because you were instinctively

avoiding it. Or perhaps you were eating limited gluten.

After 5 months on the GF diet, had your symptoms changed or

increased in any way? How much gluten were you eating?

Another test to consider is a D-xylose test to see how much you

are absorbing. Also a vitamin test might show if there are deficiencies.

Sorry that these are just some random shots in the dark, hoping

something hits home.

Pam

,_._,___

June 10, 2010

Thank you, all, for these helpful suggestions. You've opened up several new paths of exploration.On Wed, Jun 9, 2010 at 3:25 PM, jacksonbz <jacksonbz@...> wrote:

You can try HealthNOW Medical Center. They do lots of testing to see if someone is Celiac or just Gluten Sensitive. Check out their website as they have nutritionist that specialize in this matter. The doctors there are authors of " The Gluten Effect " .

Hope they can help you.