Unsure on what to do - Confused Celiac?

[MBjim]

On  new gluten free journey.  Started to realize something was wrong end of last year due to fatigue and sure enough tested for iron deficiency anemia, followed by a positive celiac blood test.   Where things have got a little confusing is the endoscopy came back negative.  I am referred to gastronomy specialist, but wont see for another few months (Canada healthcare).  Since this, I am overall feeling better and am less tired since going gluten free, am also taking iron supplements.  However sometimes I feel like am gluttoned with no idea why, possible from almonds where it (may contain wheat).  And other times have eaten something with wheat and no symptoms at all.  Not sure what to do in short term, or even what could happen at specialist that hasn't happened already to try to confirm if celiac or not.

Thanks,

[trents]

Welcome to the forum, MBjim!

First, let assure you that it is not all that unusual for those who truly have celiac disease to have positive bloodwork for celiac disease but a negative biopsy. There can be a number of reasons for this but one of the common ones is that the one performing the biopsy does not do a thorough job. Damage to the small bowel villi can be patchy and if only one sample is taken it can be missed. We recommend at least four samples be taken from both the duodenum and the duodenum bulb. I'm afraid that many GI docs are not that thorough.

Since you did not mention it as being one of your symptoms, I assume you are a "silent celiac". That is to say, you don't have the "classic GI distress" symptoms. Many of us are of the silent type and our diagnosis was made based on other symptoms or out of whack lab values, as in your case. Typically, after you have been truly gluten free for months or years you lose whatever tolerance to gluten you initially had and will react more strongly, often with nausea and diarrhea, when you do get a significant dose of gluten.

From your first post it sounds like you are not as consistent as you need to be with your gluten free eating and that is likely inhibiting healing as well as helping you maintain some semblance of tolerance. Achieving consistency in gluten free eating usually takes a significant amount of education and experience because we are not fully aware of how common gluten is used in the food industry and it shows up in products that you would never expect to find it in. For example, wheat is an intentional ingredient in Campbell's tomato soup (and in most canned soups) and in soy sauce. It is found in some brands of canned chili and pork N' beans. It can be found in pancake syrup (used as a thickener in some "light" syrups) and some chocolate syrups. Remember the goal is not to eat lower gluten (that is easy) but to eliminate it. Studies have shown that most people who believe they are eating gluten free are eating lower gluten. This is especially true for those who still eat out. You can order from  the gluten free menu in a restaurant and still get glutened because your food was cooked in the same pans and on the same grills as was used for gluten containing foods. We call this CC (Cross Contamination). Gluten can be found in medications and supplements. Wheat starch is sometimes used as a filler in pills.

In your case, you probably may not get immediate feedback when you consume gluten so that makes the learning curve a little more difficult. This might help:

 

[knitty kitty]

Welcome to the forum, @MBjim!

The damage done to the small intestine can vary.  Are you familiar with Marsh scores? Marsh scores describe the severity of damage in the small intestine.  

 

Not eating sufficient gluten daily for at least two weeks prior to an endoscopy can affect how badly damaged and inflamed the small intestine becomes.  

The gluten free diet allows the small intestine time to heal. 

You would be wise to contact the gastronomy specialist to find out whether you should be consuming gluten prior to your upcoming appointment.  

Going off gluten, then going back on gluten can cause a redoubled autoimmune reaction, making you feel worse than before.  

Much of the damage in Celiac Disease is microscopic.  Taking several biopsies from different areas are necessary.  

Some people are really good poopers.  Transit time (how long gluten is in the digestive tract) can affect how much damage occurs.

I had genetic testing done.  I have two genes for Celiac (but only one gene is needed for Celiac Disease to develop).  Some genetic tests look only for the most common Celiac genes, while others can pick up on the more rare Celiac genes.  And no gluten consumption is required.  

A positive blood test with decreasing antibody levels over time and improvement on a gluten free diet may meet the criteria for a celiac disease diagnosis.

[trents]

MBjim, you had an endoscopy done and I assume they did a biopsy of the small bowel lining at that time to check for the villi damage that is characteristic celiac disease. Can you confirm that a biopsy was done? You did not actually say that it was.

[MBjim]

Yes I did have a biopsy done.  They did only take 2 samples instead of 4.  Results came back negative for celiac.  I was eating gluten prior to the endoscopy, approx 1 piece of bread or equivalent daily.  Dr never mentioned anything about marsh scores.

I have been fairly good at gluten free since my endoscopy in Feb.   For the most part i can tell when i feel gluttoned, sharp stomach pains, i get extremely tired, sometimes a headache.  All pretty close to 90 minutes post meal.   I can confirm that I am definitely feeling better since going gluten free.   Additional energy/some weight loss/less fatigued and of course less stomach pain.

What I am finding frustrating right now, is doctors not really sure what to do.  So I did eat some gluten intentionally 2x in last 2 weeks to test it out, and no symptoms.  Yet, sometimes getting symptoms without any gluten and being very cognizant of cc.

 

[trents]

The Mayo Clinic guidelines for a pretest biopsy gluten challenge is the daily consumption of two slices of wheat bread for two weeks leading up to the procedure.

You may also have develop an additional food intolerance that is not tied to gluten. This is typical for celiacs. Common offenders are dairy, oats (even gluten free) and eggs. But it can be almost anything that contains protein. Some proteins are close in structure to gluten and cause a similar reaction.

[knitty kitty]

 

Oh, no, @MBjim. You might not have been eating enough gluten.  

On the forum, we've been saying at least two slices of bread a day.

"You will need to eat a three to 10 grams of gluten per day, and two grams is roughly equivalent to a slice of bread."

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

 

Different types of wheat contain different amounts of gluten, so while cake might not cause symptoms, pizza crust may.  More gluten is needed to stretch to form those big air bubbles and hold its shape in pizza crust dough and heavy artisan breads.  

Cake flour doesn't have much gluten.  Notice how small the bubbles are in cake.