Help With Results

[Scarletgrrrl]

Hi

I finally had my follow up appt with the gastro. on thursday. The results were that I had mild duodenitis consistent with gluten intolerance. I have an increase in intraepithelial lymphocytes and the villous/crypt ratio was 2:1. They unfortunately only did 3 biopsies.

They said it was gluten intolerance and not celiac disease but I just don't know how vigilant I need to be. I have read that normal villous/crypt ratios are between 3:1 and 5:1 so this falls below the normal range.

What are your thoughts?

S

[cyclinglady]

The proof is in the diet and how you feel.  I diagnosed with celiac disease, but my husband has been gluten-free for 12 years at the recommendation of his GP and my allergist.  He cheats and ugly symptoms rear (sinus congestion contributing to severe snoring, body aches, etc.)  Took him a year to adjust and now he never cheats (unless he gets accidentally glutened outside our home).

 

Good Luck!

[Scarletgrrrl]

Thanks for your reply Cycling Lady

I was very sick for the whole 7 weeks of the gluten challenge. I was so sensitive that I am not sure if I had enough gluten for the challenge. The gastro. seemed to think if I had celiac I would have to avoid soy sauce but with gluten intolerance I don't have to be so vigilant. I tested his theory yesterday. I was at a kid's party and there was nothing for me to eat. My blood sugar levels had really dropped and I wasn't prepared with snacks and caved in and ate chicken wings marinated with soy sauce (and who knows what). Well I am definitely feeling the effects so I will be more vigilant in future and better prepared with my own snacks.

I know gluten is the issue but I am still not sure whether they failed to diagnose celiac, whether it hasn't fully developed yet or whether I am gluten intolerant.

S

[nvsmom]

As far as I know, gluten intolerance does not cause intestinal damage, celiac disease does.

[cyclinglady]

If you have a gluten intolerance, you can also have abdominal symptoms, but not the damage.  

 

I've had intolerances/allergies for over 20 years and although some have diminished (calmed down), I still get abdominal symptoms from eating them (e.g. casein, whey, eggs, mushrooms, garlic/onions and nuts).  Only the milk proteins and garlic cause instant reactions (tingling in mouth, sinus congestion).  Do I eat these foods?  Sometimes (usually accidentally, and I pay big time!)  I always think they are going to go away......

[GottaSki]

Hi

I finally had my follow up appt with the gastro. on thursday. The results were that I had mild duodenitis consistent with gluten intolerance. I have an increase in intraepithelial lymphocytes and the villous/crypt ratio was 2:1. They unfortunately only did 3 biopsies.

They said it was gluten intolerance and not celiac disease but I just don't know how vigilant I need to be. I have read that normal villous/crypt ratios are between 3:1 and 5:1 so this falls below the normal range.

What are your thoughts?

S

 

The damage is consistent with Stage 1 and 2 on the Marsh Scale for Celiac Disease.  These first stages are not specific to Celiac Disease, but when coupled with symptoms and or blood work it would confirm Celiac Disease with minor damage.  Did you have any positive celiac antibody tests or nutritional deficiencies, elevated liver enzymes or other variances in blood work?

 

Below is the entire Marsh Scale -- trust me -- you do not want to wait for the later stages to remove all gluten.  Since you are reacting to minor amounts of gluten -- remove it ALL.  Tiny amounts will prevent healing of the damage you already have -- as you pointed out they took three slides...completely possible they missed more severe damage -- just my opinion based on your reaction to ingesting gluten.

 

Hang in there

 

Open Original Shared Link 

The cells on the surface of the intestinal lining (the epithelial cells) are being infiltrated byOpen Original Shared Link. (A lymphocyte is a small white blood cell that's involved in the body’s immune response to disease.)

Open Original Shared Link 

The changes of Stage 1 are present (increased lymphocytes), and the crypts (tube-like depressions in the intestinal lining around the Open Original Shared Link) are "hyperplastic" (larger than normal).

Open Original Shared Link 

The changes of Stage 2 are present (increased lymphocytes and hyperplastic crypts), and the villi are shrinking and flattening (atrophy). There are three subsets of Stage 3: 

--Partial villous atrophy (Stage 3a) 

--Subtotal villous atrophy (Stage 3b) 

--Total villous atrophy (Stage 3c).

Open Original Shared Link 

The villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.

[GottaSki]

just noticed you said 7 weeks of eating gluten for gluten challenge...how long had you removed gluten before re-introducing for the seven weeks of challenge?

[Scarletgrrrl]

Hi Lisa

thanks for your post. I suspected I had a wheat allergy as a 14 year old and tried my best to limit my consumption. I never even thought to get tested back then. In my 20s I got blood results back as borderline anaemic. The doctor didn't do any other tests putting it down to me being a vegetarian at the time. When I was about 25 I would get liver pains whenever I would eat certain foods. I always thought my bood couldn't handle fats or sugars. When I was 36 I went to a nutritional doctor because I just wasn't feeling very good and I wanted to prepare my body to get pregnant. I was really surprised despite my well balanced diet with lots of fruit, vegetables and eating meat again I had a lot of deficiencies. Here is the list:

• low vit B12

• low white cells

• low platelets (essential fatty acids)

• iron deficiency

• iodine deficiency

• calcium deficiency

• vit C deficiency

• zinc deficiency

I also had an impaired liver detox function. She got me to do an allergy test and it said that I was not allergic to wheat. I did not realise at the time that wheat allergy and gluten intolerance were 2 completely separate health issues. I think she did a celiac test too but I wasn't consuming a lot of wheat (and other gluten) then probably for it to pick up on the tests. In the back of my mind I thought I don't have issues with gluten because my wheat allergy test was negative.

After a couple of chemical pregnancies and a blighted ovum I decided to cut out gluten in 2008 to try and get pregnant. I didn't realise at the time to avoid spelt and oats, etc. so I had a very low intake until after my son was born. I was so hungry when I was breastfeeding it was easy to indulge in the odd pastry or scone. I complained to my doctor about back pain which prevented me from going back to work. I changed doctors and complained to the next doctor about feeling so fatigued. He just put it down to the fact we had a young baby.

The gluten intake over the next few years was sporadic. Looking back, when I did indulge more is when I had health complications: 2 cases of pneumonia in 2011and the tummy troubles which sent me up to the hospital casualty in 2012 and returned again this year. On easter saturday we went to friends for morning tea. I ate a piece of banana bread, a hot cross bun and then they invited us to stay for lunch and cooked pasta. That sent me over the edge and I was in pain for the next 48 hours and the tummy issues returned. I finally connected the dots and stopped consuming gluten. I saw my (a new one) doctor the following saturday and she suggested I check for celiac. The results came back negative. She didn't do the full celiac serum test and I also hadn't been consuming enough gluten prior to the test for the results to be accurate. With the symptoms I had, luckily she thought it was important to refer me to a gastro.

I am not sure if I consumed enough gluten prior to my endo. The gastro. was away and had a locum doctor at my initial appt. He said to just consume 2 slices of bread for 2 weeks prior to the endo. A friend who is celiac and was diagnosed after her 2nd endo. suggested 6 weeks of gluten. After reading the uni of chicago celiac centre suggest 6-8 weeks (the australian celiac society recommends 12 weeks) I started consuming 7 weeks prior. One week in though I had to stop for 2 weeks as we had planned an overseas trip and I was sick and didn't want to ruin the holiday so I put the challenge on hold. It didn't stop me feeling sick though and I had to go to the doctors there for an ear and lung infection.

Just went on a tangent!
Anyway, I am still suspecting celiac mainly from my history with the impaired liver function and nutritional deficiencies. I have just been checked for iron and B12 deficiencies because I am so wiped out at the moment. I also got a skin rash on my knee during the gluten challenge that was really itchy. I don't know if this was the beginning of DH or not.

Thanks for reading my story

S

[Scarletgrrrl]

I just called the doctor's surgery and my iron levels are very low.

[GottaSki]

It certainly makes it tough when you have known wheat bothers you...going gluten light is enough to make the tests inaccurrate yet it seems it has not been enough to completely restore your health over the years.

Another challenge certainly doesn't sound like a good option. Seems your best option now would be to remove all gluten....this means no gluten...take a look at the Newbie 101 thread to make sure you are identifying all sources of gluten. Repeat your nutritional and basic blood work and perhaps repeat endo at one year gluten-free to see if the issues that were seen during this procedure improve gluten-free. Also check if your GI ran a celiac antibody panel at the time of your recent challenge/endo so you have these numbers for comparison.

I would certainly have your child tested now if he is ingesting gluten. It is advised that all first degree relatives be tested every three years or more frequently if symptoms arise.

[1desperateladysaved]

Greetings Scarlet,

 

I hope you see those nutrient levels come up soon and the fatigue goes away. 

 

D

[Scarletgrrrl]

Greetings Scarlet,

 

I hope you see those nutrient levels come up soon and the fatigue goes away. 

 

D

Thanks D

[Scarletgrrrl]

It certainly makes it tough when you have known wheat bothers you...going gluten light is enough to make the tests inaccurrate yet it seems it has not been enough to completely restore your health over the years.

Another challenge certainly doesn't sound like a good option. Seems your best option now would be to remove all gluten....this means no gluten...take a look at the Newbie 101 thread to make sure you are identifying all sources of gluten. Repeat your nutritional and basic blood work and perhaps repeat endo at one year gluten-free to see if the issues that were seen during this procedure improve gluten-free. Also check if your GI ran a celiac antibody panel at the time of your recent challenge/endo so you have these numbers for comparison.

I would certainly have your child tested now if he is ingesting gluten. It is advised that all first degree relatives be tested every three years or more frequently if symptoms arise.

Thanks Lisa

I am going to book my son in to see the doctor. I will also check out the newbie thread. I see my doctor tomorrow about my iron levels. I will ask her for a copy of the celiac blood tests (I had it done on 2 occasions).

S