9 replies to this topic

[hollyd]

I had my biopsies done by a specialist in celiac who is also a researcher in the disease. They were negative, they said they were going to take them from several sites and take a large number of them. There is no evidence of damaged villi. I am now 4 months gluten free and the bloating and "runs" are gone. The only time I have a problem is if I accidentally get glutened and then I feel the way I used to. Except for when recently getting glutened from a restaurant I am no longer getting that flu-y achey muscle thing that I kept getting previously which had me filling sick for a week.

The doctor is calling it IBS but I've never really had the symptoms of IBS. The "runs" were only in the morning - very wierd. He's questioning whether I have fructose malabsorption and/or lactose intolerance but I don't react to lactose when I eat it. The fruit I'm not so sure about.

He cannot explain why it took 2 years of zinc supplementation to get my zinc to normal or more than 2 years of iron supplementation to get my iron to something other than scraping the bottom level of normal (below normal w/out supplementation). One would think that if I was not absorbing these things from my food the villi would appear damaged.

He wants me to see some expensive nutritionist to check for fructose and lactose stuff but I'm wondering whether I can just do that on my own. It doesn't sound like rocket science. I guess you try various foods one at a time and see how you react, right? Anyone done this on their own?

Can I still be celiac? There's just no way I can tolerate gluten anymore. Can it be just gluten intolerant without celiac and can you get malabsorption of minerals from that? Can having IBS make you intolerant to gluten? I was reading that gluten is not considered an offending food for people with IBS, quite to the contrary as whole grains are supposed to be good for it.

Thanks very much for any information you can offer.

Holly

[mle_ii]

For me, my fructose malabsorption showed up when I started eating more honey in my teas. So try 1 or 2 tablespoons of honey, you can raise or lower the amount to determine your threshold for symptoms.

For me my symptoms were lots of gas, cramping, pain and sometimes loose stools.

[Ursa Major]

Holly, were the biopsies taken after you were gluten-free for four months, or before? If they were taking after, then they are totally invalid, as your villi could have healed in that time.

[rogue]

I was diagnosed with celiac disease one year ago- even with a negative biopsy. I also had Vitamin B12 Definiency Anemia, which can only be caused by malabsorption problems or by being a strict vegan. Since I eat animal bi-products on a regular basis, it only left the former to be concluded. You have 20-22 feet of intestines and the endoscope reaches only a fraction of it. The biopsy, in my opinion and the opinion of my doctor, is not all that accurate. It can tell you 100% for sure whether you have it, but is not entirely conclusive.

[Rikki Tikki]

I agree if you feel better on the gluten-free diet than stay on it. I firmly believe that the biopsy can miss some of it, or the villi could just not be damaged yet. I have read many posts that speak of this.

[CarlaB]

My first question was the same as Ursula's, were you gluten-free before the biopsy?

There is such a thing as non-celiac gluten-intolerance. My ob/gyn told me to quit looking for clinical proof, my dietary response IS clinical proof.

If you are feeling better gluten-free, then I wouldn't bother with the other tests. If you still have issues, then I would look into what else it could be.

My biopsy was negative, too. Were your blood tests positive? If so, that indicates that you do react to gluten. The fact that your intestines looked fine could just mean that they weren't significantly damaged yet, or the damage was spotty and they biopsied the wrong spots. I don't understand why GI docs seem to think that the biopsy can prove that you don't have it. All I've heard says it is the gold standard for proving you do have it, but a negative biopsy cannot rule it out.

[Super Bellybutton]

You have 20-22 feet of intestines and the endoscope reaches only a fraction of it. The biopsy, in my opinion and the opinion of my doctor, is not all that accurate. It can tell you 100% for sure whether you have it, but is not entirely conclusive.

That's such a good point. An endoscope is never 20 feet long...or even half that.

[hollyd]

Hi Everyone,

Thanks a lot for your replies. I was definitely eating lots of gluten before my tests and had never gone gluten free until after my tests.

I guess I won't ever know if it's celiac or that non-celiac gluten intolerance. I just don't know how you can take all those supplements and have them have NO effect until you've built up 2+ years worth of it in your system. Some people have very serious negative effects from taking too much zinc and obviously you can from iron as well. I would guess that those who are diagnosed as celiac who have mineral deficiencies would have to supplement and it might take a long while before they get the benefits - which seems like what happened to me. it just isn't good enough for me to have him say he doesn't know why I had those deficiences that wouldn't respond to supplements for so long. I guess they do get very narrow in their definitions - if they see no damaged villi, they say no celiac and have no curiosity as to why you weren't absorbing minerals.

I am definitely feeling better gluten free. I'm not sure whether I'll bother with the expensive dietician. I've cut out fruit for awhile now and I think I'll try adding some back in and see what happens. I am using a bath soap that has some wheat germ oil in it as I've been thinking if it isn't celiac it's not a problem - maybe I should see how I do with a totally gluten free soap. There is still one symptom that is mildly annoying that hasnt gone away yet.

In terms of the length of the endoscope, what I read was that the majority of the damage would be at the stomach end of things where the food first enters and so that is why they biopsy from there.

[CDFAMILY]

Hi Holly,

I have a hard time with biopsies also....can you really trust them...I had and still have a positive AGA IgA, tTG and EMA...but my biopsy only showed "Mild Chronic Inflammation and slight Villous Blunting....Comment: The possibility of partially treated celiac sprue cannot be excluded. Clinical correlation is required".....It was a positive dx but with my high numbers it should have been total villous atrophy according to most info on having positive tTG and EMA. So, where was/is my damage...I don't think it is in the Duodenal area...I think mine is somewhere else otherwise they would have seen the major damage I have.

The doctors have so much to learn and some are now saying the IgA's are going into the brain and CNS which is where I believe most of mine hangout...LOL....we are the people that are showing neurological damage.

This is a really interesting site on TIght Junction Dysfunction:

Zonulin and Tight Junction Dysfunction

An interesting site about tight junction dysfunction http://www.albathera...logy/index.html

My interpretation of this is: This tells how you have villi in the small intestine that absorbs nutrients and has a barrier that prevents bad things like gliadins from entering the blood stream. If you click on next a few times you will see the attack of gliadins from gluten destroying the barrier and opening up the bloodstream to the gliadins, which of course go to the brain and start their attack on the neurological system. This is called a leaky gut syndrome….which basically is what Celiac is all about….but also is the probable cause of Diabetes and other autoimmune diseases.

Also some good info on Zonulin:

http://www.ncbi.nlm....p;dopt=Abstract

Diabetes. 2006 May;55(5):1443-9.
Related Articles, Links

Zonulin upregulation is associated with increased gut permeability in subjects with type 1 diabetes and their relatives

Hopefully they will figure a way just to do blood or bowel tests to find the answers to all our health problems.

[hollyd]

Hi celiac disease Family,

Thanks for the interesting links. I would definitely think I had celiac for sure if I had your family history and blood results. It does seem like they haven't gotten it all worked out yet if they didn't find the atrophy in your biopsies. My blood work showed only elevated IGA IgG which is the sensitive marker but not specific. All the others came out normal. It makes it harder for me to make the case that it's celiac though the malabsorption of minerals despite supplementation and response to a gluten free diet and reaction to accidental glutenings tell a different story.

Can I ask what sort of neuological symptoms you're having? I'm curious about that for myself.

Thanks :-)
Holly