Celiac Disease Support Group

Another reason to get a biopsy done!

How many people are actually successful at eliminating 100% of their contact with gluten?

Only 1% continued to get worse, which is a pretty good sign. Since the damage seems to often be permanent it seems like we should stop doing damage to ourselves as soon as possible by not continuing to eat gluten when it seems like the likely cause of our ailments. When something can damage you beyond repair, maybe you shouldnt do it.

Fortunately for the people whose symptoms do not improve, those are the people who will still show signs when they finally get a biopsy, if they didnt get one to begin with. The people who heal completely on the GF diet will hopefully stick with it because they are the ones who are less likely to test positive on a biopsy.

A really good reason to start a gluten free diet ASAP when symptoms are present.

Damage will show up despite being on a gluten free diet for any amount of time!

From a recent talk given last month by Dr. Peter Green, Celiac Specialist at Columbia University:

Why biopsy is still needed:

-One needs to have a baseline to follow progress and evaluate care plan.
-Someone may have temporary gluten intolerance (even in the presence of a positive TtG blood test)

-Biopsy is especially important in children as this is a life-long diet .

-People with celiac need specific followup care , such as bone scans, blood tests, etc that will not be paid for by insurance unless condition is confirmed.

-GF diet is usually inadequate in - B vitamins, calcium, iron, so should not be undertaken unless necessary, and must be under supervision of doctor/nutritionist to make certain vitamins minerals are being eaten and absorbed through diet as well as supplements.

-Celiacs are prone to other conditions, including certain types of cancers, autoimmune thyroid problems. They should be screened for low levels of certain vitamins, and other issues. How many doctors will know to do this if they consider you "gluten intolerant"? He said: "Will you get the care you require if you stop at the blood tests"?

-There are about 10% Of the people in the US who are IgA deficient, meaning that they can't make IgA antibodies; so the standard IgA tests for CD for those people are useless.

Dr. Green also recommends blood tests be done at intervals in children before doing the biopsy, even in presence of TtG, as gluten intolerance can be temporary and not CD.

Genetic testing - nearly 100% of celiacs have some combination of DQ2 and DQ8. Miniscule percentage do not have these genes.

Role of genetic testing :
-Assessing relatives to see if they are postive
-Questioning of the celiac diagnosis due to negative biopsy
-If already on GF diet , genetic testing is recommended as antibody blood testing will be inconclusive.

Gluten sensitivity - symptoms go away on a GF diet, but negative blood testing is the result. Doctors have a hard time dealing with it because there is no test to quantify it.

In one study, Dr. Green looked at adults with biopsy-proven celiac disease who also had blood testing at the time of their diagnosis, and a positive response to a gluten-free diet. Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy on biopsy. Blood test results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms.
 
The researchers conclude: "Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature."

While biopsy is not perfect, it is better than blood tests at confirming celiac. Possible reasons for false negative biopsy include:
-If the biopsy is negative, be sure to ask if the pathologist evaluating the slides is a GI pathologist. Most are not.
-Inadequate number of samples is a problem, they should be greater than six, ten is better.
-The disease is patchy
-There is under or over interpretation of atrophy on samples.

Dr. Green also stated that celiacs do a poor job of raising money to look or cures for the disease. We spend a lot of time having support groups telling each other what to eat, but we need to do more to raise funds for research. If we had diabetes, we would raise money for research.

He also said the only way to improve diagnostic methods is through research.

Anyone that has a problem with this information should write to Dr. Green, or better yet go see him and get a biopsy.

That's correct in my experience.
There isn't anything with gluten in my home and no cows milk in my home either. I still struggle with an abnormal need to run the the bathroom.

I've improved greatly and it's just not normal to be concerned about waiting too long to be in the bathroom in time to not have an accident. This is an issue almost every day and 24/7.

I know I am 100% better than I was prior to being gluten free.
Now, I've improved a LOT MORE due to removing ALL cows milk from my diet.

Often the people with long term experience will tell folks that each persons disease process is individual so no one know how much better or how long it will take to know a lot of how much healthier one will be by being strict with the diet. Along with making sure other products are not in our lives such as soaps with gluten.

Shrink, you opinion is valid but why do you need to hijack every single discussion and turn it into the same old debate?

I already expressed my position. I am not against getting a biopsy. You dont have to argue that with me. What I am against is waiting months or years before starting a GF diet if financial hardships or other barriers prevent you from getting a biopsy within weeks of positive blood work.

Getting all your vitamins and minerals on a GF diet really should not be all that difficult, so I have to disagree with your article. The real barrier to getting enough nutrition is the damage done to your guts. I already supplement and my diet contains all the nutrients I need, minus what I cant absorb because of Celiac.

What you refuse to acknowledge are the following.

1. It is not likely that the damage done to the guts will heal immediately or even within the first year. Starting a GF diet is unlikely to interfere with diagnosis if the biopsy is done quickly.

2. I have not argued against getting a biopsy, though I have argued that it can be appropriate to try a GF diet first before spending money on an expensive procedure that might give you a false negative.

3. The people who dont improve on a GF diet will still have the markers in their guts and it wont interfere with their test results when they do go in for a biopsy.

4. The people who get better on a GF diet and seem to recover well enough to miss diagnosis are the people who are less likely to need that other care you are talking about.

5. This is not a discussion about biopsies. This is about permanent damage being done by continuing to eat gluten. Not every single discussion we have needs to get hijacked and turned into a thread about biopsies. Sometimes I like discussion the OP and just the OP without getting into the same old debate from thread to thread.

RIGHT ON Sentient..

For anyone else who is doing their utmost to stay GF, but still suffers frequent "gut" problems (e.g. diarhhea, gas, bloating, nausea), it might be time to consider the fact that you also suffer from IBS. That's the conclusion I am rapidly closing in on. I have now joined the Irritable Bowel Syndrome support group as well, and find that I can relate very well to their experience.
Not great to realize one suffers from TWO gut problems, but at least it's a step closer to eliminating the miserable symptoms.
Yes, I AM working with my doc and with a specialist on this, but they move soooo slowly, and I want answers asap. My life is on hold!

Unsinkable,

This is an interesting topic. All the symptoms of IBS that I had went away once I was truly GF and dealt with the lactose intollerance. There are so many hidden sources of gluten that it took a long time for me to discover them all. I get all those IBS symptoms within a day of eating things that contain trace amounts of gluten. Frankly, this is why I don't believe the studies that claim celiac's can eat extremely small amount of gluten each day without problems.

I hope you get the relief that you need. It is a real pain having more than one "gut" problem. I am prone to ulcers. That makes many more foods off limits than just the gluten ones. People start to say rude things like, "oh come on, no one has that many problems". So I don't tell people about more than the celiac. You must have supportive people around you.

Good Luck
C