"to Biopsy Or Not To Biopsy....now That's A Question!"

[Guest Kathy Ann]

Went to my first state celiac convention today. It was very well organized and highly informative. But after hearing a notable gastroenterologist speak and then having a quick word with him afterwards, it's obvious that I'm going to have to make a difficult decision soon.

I've done 3 alternative tests - saliva, ELISA and stool. I did the genetic and malabsorption tests too. They were all across-the-board positive towards celiac. But in fairness, I realize that while they certainly have great value, these tests apparently aren't considered definitive for celiac within the medical community because of some lacking research. I didn't know any better when I went off gluten first and didn't get the simple medical blood test done before.

But there would be nothing wrong with just using those tests I did IF I felt better gluten free. But after 6 months, I still don't. Even the gastroenterologist said that obviously improved symptoms after gluten elimination would stand as good evidence with him and not require much else.

But in my situation, everything points towards a gluten challenge, blood test and probable biopsy.

Questions. Did some of you biopsy-confirmed celiacs take longer than 6 months to feel anything? How long would I have to eat gluten for an average challenge? How bad could it get and how much actual damage would it do? Anybody really sold on them? I'm not used to medical procedures.

Since I don't feel good anyway, what if I went and did a medical blood test even though I I've supposedly been off gluten 6 months? If I'm still accidentally getting it, wouldn't the antibodies still show up elevated if I'm actually celiac? Our local clinic will do it for 20 bucks without a doctor. Would that give me any more answers or just postpone the inevitable?

[CarlaB]

I just haven't felt physically or emotionally very good for many years and it feels like my entire nervous system is deteriorating as we speak. I need answers.

First, was the stool test Enterolab? If so, it's considered accurate around here.

I was gluten-free, then went on a gluten challenge for six weeks for testing. I've heard four months, four slices of bread for a challenge. My six weeks wasn't long enough, and they didn't find anything. Biopsies can prove you have it, but can't rule it out. So, you could conceivably go on the challenge, feel even worse for four months, and still have no answers. I think you're better off ruling out other things, personally -- if your doc has any ideas.

Has anything gotten better gluten-free? Are you sure you have eliminated ALL gluten? Even hidden gluten and contamination?

I quoted part of your comments because what I found was my "missing link" was adrenal fatigue/burnout. Now that I'm addressing it along with the gluten, I'm feeling much, much better. Google it and see if it's a fit. Also, I'm sure others will mention what their "missing links" were ... see if anything gives you any other ideas.

If you're not getting better, you do still need to keep looking.

[Guest Kathy Ann]

It IS my natural inclination to believe my enterolab stool test results. But the authorities at the convention today just don't. Who's right???? Why hasn't Dr. Fine published his great research so we can all breathe a sigh of relief? I sure like what I read on his website. It makes sense.

[CarlaB]

I am under the impression that Dr. Fine isn't hasn't published his research yet because he's not done. But that's just my own speculation. Look over his CV .... he's a reputable doc! It's impressive.

It's quiet around here on the weekend ... you'll get other responses soon.

[Guest Kathy Ann]

Oops...forgot to ask. What about the gene that isn't celiac?

[CarlaB]

I have two copies of the DQ1, 6. It's a gene that predisposes you to gluten sensitivity. With two copies, I'm very sensitive. Apparently, it's the one that's associated more with neurological symptoms in addition to the digestive ones.

[Guest Kathy Ann]

Thanks!

[Ursa Major]

Kathy Ann, I found that I am very intolerant to all lectins (especially rice, soy, dairy and eggs give me the same symptoms as gluten, beans don't seem to be as bad), as well as foods high in salicylates and all nightshade foods. I used to get a lot of neurological symptoms as well, until last summer my gastro symptoms were annoying, but not so bad that I would have thought of celiac disease myself (being uninformed, of course).

I've apparently suffered from adrenal fatigue for most of my life, too, but just recently have moved towards complete burnout, which is being treated right now.

Anyway, you may want to check the links in my signature, you may have other intolerances that can make you feel like you're glutened, without ingesting any gluten at all.

[Mayflowers]

I had Enterolab too. I won't even bother with a biopsy. These GI's only want to make money doing expensive (dangerous) tests. They don't make money off a stool test.

One way which I did and I can see a big difference even if I don't feel totally great. I have food allergies on top of the intolerances, is a before and after picture of your face. I have them and I was shocked at the difference in my complexion and my eyes have a sparkle to them. The before picture has a pastey complexion, and I didn't look well. I look about 5 years younger and it's only been a month. So try the before and after picture test and see if you don't notice a difference in your skin, appearance and eyes.

[Guest Kathy Ann]

Mayflowers, Our enterolab results look similar. I am also allergic to many things besides gluten.

Ursula, I am officially allergic to many things including a couple of beans according to York's big ELISA test. I just got some great bean flours today at the convention. In your opinion, am I likely to be sensitive to all beans, according to the lectin theory? Or can you be sensitive to some of them and not others? In other words, do you eliminate things by families in that theory, or can you treat each food individually?

[Ursa Major]

Ursula, I am officially allergic to kidney beans and peanuts, among many other things according to York's big ELISA test. I just got some great bean flours today at the convention. In your opinion, am I likely to be sensitive to all beans, according to the lectin theory? Or can you be sensitive to some of them and not others? In other words, do you eliminate things by families in that theory, or can you treat each food individually?

Kathy Ann, you go by families. If you have doubts about ALL beans, what you need to do is eliminate them all for a month, and then try them one at a time, two weeks apart. That way you don't miss delayed reactions. It is possible that some would be worse than others. An elimination diet is the way to figure it out.

I tried the fava bean flour a little while ago, and it was a bad idea, it gave me a stomach ache.

[CDFAMILY]

Kathy Ann,

I have been religiously gluten free for 16 months. I am a DQ2 and DQ1,6. All my numbers are still positive as of May. I am just starting to notice some improvement neurologically. I was diagnosed the conventional way but realized my gastro was not extremely informed about Celiac when I asked to have my vitamin D checked and he refused so I have not gone back to a gastro for help and have relied on my new Primary internal doctor for advice. My primary doctor also diagnosed my daughter, son and husband without a biopsy and only blood tests which is not what gastro's like to see but...who cares!

Have you had the blood tests? If not maybe go ahead and have them to see where your numbers are at, at this moment. I would ask for the entire panel including AGA IgG, AGA IgA, tTG IgA and EMA. I would also ask to have your vitamin D, B12, K, folic acid and a full iron panel and CBC/diff done. I would also recommend that after you have your vitamin levels checked that you immediately start B12 methylcobalamin sublingual. This will help with the nerve repair. With me, I had so many neurological complications that I was not one of the lucky ones that felt better quickly. I did have some immediate relief early on but it only lasted a few days and then I seemed to relapse for a long time. I know it wasn't cross contamination as my husbands numbers have gone down and we are eating the same things. I think I was just more damaged.

Another thing that has recently helped was I started taking a prenatal vitamin. My doctor recommended that for my daughter and I decided to try it too. When I mentioned this at my Celiac Support Group, many also had been taking prenatal vitamins. My daughter and I noticed a difference almost right away when we started taking the vitamin.

There is a website that has a lot of information all gathered into one area about gluten with a lot of discussion on the neurological side of Celiac. JC but this together and she is a fantastic researcher for the Gluten Sensitivity/Celiac Disease cause. Here is the link:

Open Original Shared Link

I have a printable page with all the labs I have my family take to their doctors to get tested for Celiac. If you want this, just PM me with your email address and I will insert it so you can print it out.

Good Luck

celiac disease Mom

[Looking for answers]

Hi,

As for the anxiety issues, I highly recommend reading, "The Diet Cure" by Julia Ross. I also suffered from severe anxiety, as did most females in my family, but this book help to curb it tremendously. Also, I recently had a biopsy done, and the worst part of it was the anticipation of the procedure. For the procedure itself I went in and out of sleeping and I ended up finding the whole procedure fascinating-- go figure!

Best of luck to you! I hope you feel better very soon!

[Jestgar]

CDFAMILY had a good point. Get your vitamine DAKE levels, iron levels, calcium levels etc. checked. If these are low, it's strongly suggestive of malabsorption issues which could be related to Celiac.

My question to you about the biopsy is: If it's negative are you going to keep eating gluten? If the answer is no, then don't do the biopsy, you're just wasting your time and money. If the answer is yes, you might change your mind once you start the gluten challenge, but otherwise, do the biopsy.

If the answer is I dont know Im just tired of all this and I want to feel well and I hate not knowing and somebody just give me an answer and I dont want to deal with this anymore

Then take a deep breath, and start eliminating things one at a time to see if you feel better when you stop eating them. Take careful notes of how you feel, and give yourself at least 2 weeks free of each thing to see if it's making a difference.

[Mayflowers]

Mayflowers, Our enterolab results looks very similar. We are the same genetic types on both genes. I am also allergic to many things besides gluten. I normally shy completely away from the medical establishment. I respect their talents, but have preferred to pursue health down a more alternative path. I will try to take a better "look" at myself and see if I can observe a change as time goes by.

Ursula, I am officially allergic to kidney beans and peanuts, among many other things according to York's big ELISA test. I just got some great bean flours today at the convention. In your opinion, am I likely to be sensitive to all beans, according to the lectin theory? Or can you be sensitive to some of them and not others? In other words, do you eliminate things by families in that theory, or can you treat each food individually?

Hi Kathy Ann,

Hey we do have the same genes! I'm starting to think that I'm intolerant to beans too. Some kinds give me a rash, like skeeter bites. Great Northern, Black beans, pinto. Kidney beans are ok. I eat some chick peas ok. It's really hard to figure out which ones I'm allergic to, but they all make me bloated...yuch..I hate that feeling. I have allergies on top of the intolerances...citrus, grass, trees, dust...

I have a weight problem also...