Testing dilemma

[PaulUK]

Hi all,

Three months ago, during a routine appointment to discuss a range of health problems I thought just related to age (I'm 48) my doctor suspected I might have celiac and ran blood tests which showed positive. This was somewhat shocking but also like a revelation as I've been struggling with these health issues for years and over the last year they have got quite severe. 

My doctor advised me to cut out all gluten from the diet. She said I was level 4 on the scale of the disease and said my bones were very low in calcium because of it, and I had osteopenia (I suffer with chronic back pain as one of my symptoms) and my blood was abnormally low in vitamin D. 

She prescribed me 40,000 IU Vit D a week and told me to get plenty of calcium foods and only eat gluten-free label foods she said even a small amount of gluten would be harmful.

Here's where it got a bit confusing. I got an appointment from the consultant in about 4 weeks from then, for what appears to be a pre-biopsy consultation. I queried this with another doctor and he told me you can't have a biopsy now you're off gluten you have to go back to eating gluten before we can do that test, for at least 6 weeks he said. He didn't give me any information on how much or how often I needed to gluten foods. To cut a long story short, I started eating gluten foods again gradually, but by the second week became very ill. Intense stomach pains, diarrhoea, chronic fatigue, skin infections, pains in gut and back, muscle aches, gums bleeding etc. I couldn't stand it so had to stop and went back to gluten-free and some of the symptoms started to improve. 

So my question is basically two-fold:

1) Is it absolutely necessary for someone with an advanced stage of Celiac to have the intestinal biopsy or is this just the doctor wanting to follow procedure and be thorough? By my reasoning, I feel much better off gluten foods and the difference is dramatic (stools look very different, no stomach problems after meals, sleeping better), and the blood tests support this too. So even if I tested negative I would not eat gluten foods as I'm definitely sensitive. 

2) If it is necessary to have the intestinal biopsy to treat the condition. Why is it so, and how much gluten foods should I eat during the 6 weeks, and how often? 

Thanks,

Paul

P.S. As an aside..I developed in my 30's (as life-long lover of real ales) severe hangovers when drinking any kind of grain beers (will typically last 2-3 days leaving me bed ridden with massive pounding headaches and high blood pressure) but interestingly only mild from Budweiser. It was from your site and forum that I discovered other Celiac sufferers have the same experience. I always wondered why beer (and not other alcoholic beverages) could these terrible hangovers but had no idea it could be gluten allergy! Today I had my first gluten-free real ale. Unlike the gluten-free breads (which taste like wet cardboard or sawdust) this is actually very nice and hardly different to me (it's a proper labelled product by gluten-free supermarket) so that's a silver lining to this disease.. I can drink beer again!

[Ennis-TX]

The Biopsy is needed to check for damage to the small intestines and confirm how much damage you have done to your intestines. It gives the best idea to the stage of damage, as you can not tell this from a blood test. I imagine your doctor judged the stage by secondary issues that normally develop with long term intestinal damage. Here is some stuff on it.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
If your doctors will put you have Celiac on your records without a biopsy then your good, if not you might consider the gluten challenge again, you only need to eat 1-2 slices of bread a day, biopsy they say 2 weeks prior instead of the 6-8 weeks. Consider the case of being stuck in the hospital, or arrested and not having it on your medical records...they will give you and feed you gluten as there would be no medical reasons not to on record.

On the PS make sure they are ales/beers NOT made with gluten grains, gluten removed beers are not safe for celiacs.

[Fenrir]

Well the problem is that you cannot be sure it's celiac without a biopsy. There are a small number of people with other health issues that will come up falsely positive on the celiac blood tests. So it you want to be sure what the problem is, biopsy is required. 

However, some folks due just go gluten free and that's that. I don't recommend that just because if you're one of the few folks that have a false positive a gluten free diet may not be the only thing you need to do to solve the problem. It could be other things that require other treatments. 

[Scott Adams]

In your case it sounds like there is no need to torture yourself and get an actual diagnosis. Many people don’t realize that having a diagnosis of celiac disease will cause your private health insurance rates to skyrocket (at least in the USA) and make it more difficult and expensive for you to get life insurance, which I’ve experienced firsthand.

Eating gluten for two weeks would not be enough time, and most doctors recommend at least two months. If you’re not willing to do the full gluten challenge, then you may just want the biopsy to know the condition of your gut anyway.

Because the diet is so restrictive many people need a formal diagnosis in order to stay on it for life. If you believe that you can stay gluten-free without such a diagnosis, then you may decide the gluten challenge isn’t worth it in your case.

Depending on your blood test results and the fact that you feel much better after going gluten free your doctor may be willing to diagnose you based on this alone. Having a formal diagnosis will also allow for your doctor to give you follow up testing and biopsies going forward to assess your recovery.

[Beverage]

Yes, you can get a medical diagnosis without the biopsy. I did, and I got an official letter from that doctor with that diagnosis in case I ever need it (but I have not yet).

It takes 3 things:

1. positive on the blood tests

2. positive on DNA test

3. response to the gluten free diet

HOWEVER, since you  have a doctor that told you to get off gluten BEFORE the biopsy, this doctor just proved to you that they are obviously not knowledgeable about Celiac's, so you must GET A DIFFERENT DOCTOR ASAP!!!

That doctor is not up to date anyway, so would not give you the official diagnosis based on the 3 things I have listed.  You're wasting your time and money and health by going back to this doctor.  Doctor's offices will take questions and often the PA will get back to you and you can ask about the doctor's experience, if any other patients with Celiac's, and have a few pointed questions ready that will expose if they are really up on it or not. 

[NNowak]

25 years ago when I was diagnosed, protocol was somewhat sloppy. The GI diagnosed me based on my bloodwork and did an EDG at least 6 months later. I hadn’t eaten anything but baked potatoes and eggs for probably 8 weeks prior to the biopsy. My villi showed “blunting,” and the GI recommended a gluten-free diet for a few months. “Most Celiacs can tolerate a little gluten,” I was told. The genetic test was done by my OB/GYN several years later. 
 

I would insist on an EDG with biopsy just so you know the damage, and have a comparison later on. It can take 6-18 months to heal mucosal damage. It is possible to do a fecal test for celiac, mucosal damage, and the insufficient enzyme (zonulin) through your GI, or a functional medicine practitioner, for up to a year after gluten exposure. Make sure you get the genetic test as well - super important!

Feel better!

[cyclinglady]

On 2/6/2020 at 7:33 AM, Scott Adams said:

In your case it sounds like there is no need to torture yourself and get an actual diagnosis. Many people don’t realize that having a diagnosis of celiac disease will cause your private health insurance rates to skyrocket (at least in the USA) and make it more difficult and expensive for you to get life insurance, which I’ve experienced firsthand.

Eating gluten for two weeks would not be enough time, and most doctors recommend at least two months. If you’re not willing to do the full gluten challenge, then you may just want the biopsy to know the condition of your gut anyway.

Because the diet is so restrictive many people need a formal diagnosis in order to stay on it for life. If you believe that you can stay gluten-free without such a diagnosis, then you may decide the gluten challenge isn’t worth it in your case.

Depending on your blood test results and the fact that you feel much better after going gluten free your doctor may be willing to diagnose you based on this alone. Having a formal diagnosis will also allow for your doctor to give you follow up testing and biopsies going forward to assess your recovery.

Since the American Healthcare Act was implemented, you are no longer penalized for a preexisting medical condition.  Believe me, in the old days, my Hashimoto’s was cause for health insurance denial or I paid 30% more (we are self-employed).  Now life insurance.  That is still an issue!