Sanity Check - Diagnosis Of 'early Celiac'

[ragtag]

Hello everyone,

 

I'd just like to get the opinions of some people who have dealt with celiac. I have been feeling off for years, the first complaint that might be celiac related that I went to the doctor for was 7 or 8 years ago - brain fog, feeling out of it. This persisted but a few years ago, I had a total physical meltdown and developed such extreme fatigue that my life became absurdly difficult. I would fall asleep on the way to and from work, standing up, you name it. Weekends were spent sleeping 12-14 hrs a day. I was tested for lupus and thyroid issues as well as general blood work but everything came back normal aside from a constant low grade fever and slightly high white blood cells. In addition to the fatigue, I lost half of my hair, had strange rashes, petechaie and deep fingernail ridges. I was given antidepressants and everything was chalked up to anxiety/depression.

Energy levels gradually improved but on a whim I decided to add a vitamin D test to the panel I have done through my workplace every year. My vitamin D levels were barely detectable. My doctor has had me supplementing with 50,000 units weekly and the highest level I've reached has been 18.

This past fall, I began experiencing chronic diarrhea which has now become a daily thing. I can't remember the last time I had a normal bowel movement. However, there is no pain or blood.

I had to switch to a new primary care doctor and the detailed history she took combined with the diarrhea lead her to test for celiac. The test for IGA deficiency came back normal and my TTG levels were 17 on a scale where anything over 10 is considered positive. I was told to continue eating gluten and come back for a biopsy. After the procedure, the doctor noted that she saw areas of nodularity as well as flattening in the lining of the duodenum which she said could indicate celiac. Here is the report from pathology, indicating that the villi are intact but that intraepithelial lymphocytosis was found:

 

 

 

FINAL DIAGNOSIS:

 

A) Duodenal biopsy:

- Duodenal mucosa including Brunner glands showing focally increased

intraepithelial

lymphocytosis not associated with villous atrophy, see NOTE.

- No granulomas, ova or parasites, atrophy, chronic or active

inflammatory infiltrates in

lamina propria, or neoplasm identified.

 

 

NOTE: The finding of increased increased intraepithelial

lymphocytosis on H&E and CD3 stains on blocks A1 and A2 is not

specific. The lymphocytosis can be seen in association with

gastritis and can also be seen with celiac disease which has been

treated or may represent a less than fully developed expression of

celiac disease in an area of minimal involvement. Clinical

correlation is suggested and correlation is serologic testing if

this is available.

 

So, my doctor is thinking it's 'early celiac' and has told me to switch to a gluten free diet (which I have) and see how I feel after a few months. I'm just worried because I thought that TTG would not be positive unless there's a fair amount of damage, so I'm concerned that the damage is elsewhere or not due to celiac. Is it possible that the changes that the pathologist found could cause the positive TTG, diarrhea and other issues I'm experiencing? I'm just concerned because it seems like my symptoms and blood test results are out of proportion with the pathologists findings. I've expressed this concern to my doctor and she stated that since celiac is so patchy, there is often less damage indicated in the biopsy than the blood test since they can miss more affected areas.

 

What do you all think? Would you pursue any additional testing at this point in addition to going gluten free? Thanks in advance for any advice or reflection you can offer.

 

 

[kareng]

I don't know how many samples they took.  The damage is usually sort of patchy.  The whole small intestine doesn't have to be ruined to give you issues.  Its quite possible they missed the really bad spots. 

[ragtag]

I believe they took 8 samples...

[kareng]

I believe they took 8 samples...

And the samples are less than a centimeter and you have 16-20 feet of small intestines. Not very small, are they?

[IrishHeart]

It would be enough for me to think I have celiac.

Your doctor is correct (and this is not easy for me to say, given my track record with

doctors )

 

The term "early celiac" is explained in several celiac articles and: 

 

(1)You have a positive TTG  

 

(2) and your biopsy result is  "suggestive if correlation is in serological testing"

 

 

Welcome to the family..  what can we do to help?

 

 

my TTG levels were 17 on a scale where anything over 10 is considered positive\

 

 

 

and this  "can also be seen with celiac disease which has been

treated or may represent a less than fully developed expression of

celiac disease in an area of minimal involvement. Clinical

correlation is suggested and correlation is serologic testing if

this is available".

[ragtag]

Yes, I just checked the report and the samples were 0.1-0.3 cm in size, and with several yards of small intestine that is indeed a tiny portion represented. At this point I guess I just have to proceed as celiac is the only problem and reevaluate if my symptoms persist. I'm not looking for a reason to deny celiac, rather I'm relieved to know that I've figured out what has been wrong for so long and now have the opportunity to heal. I'm just very scared that something else is amiss, but I suspect that once I start to feel better and my symptoms start to fade, I won't need much convincing.

Thanks so much, everyone! I'm so happy to have this forum and all its knowledge and support behind me as I start this healing process.

[ragtag]

Thanks so much to those of you who responded a few months ago! 

 

I just figured I'd provide an update. I've been gluten free since my biopsy and many of my symptoms have resolved, especially the digestive issues I was having. I'm still working on bringing up vitamin levels, but I got some great news a few days ago. A follow up test on my TTG levels showed results in the negative range! I've been super vigilant about following the diet and avoiding cross-contamination, and it's great to know that all that work is helping with my healing. 

 

Thanks again, it's so great to be able to look to this resource and get help and advice from those in the same boat!

[cyclinglady]

Congratulations!!!!

[mommy2krj]

That is wonderful! I'm glad you are starting to feel better and are on the road to recovery.