6 replies to this topic

[KristinIrwin]

Hi all! I've posted on here before and have gotten really great responses so I was hoping someone could help me out!

 

My story is super long so I won't go into too many details...

 

I had a slightly elevated ttg blood test in february ( 4 normal, mine was 7) after getting the test because of constipation, weight loss, pain, and bloating for a couple of months. They told me to go off of gluten and see how I feel and come back for a later appointment. I went off of gluten for about 4 days and noticed I felt a lot better. But then they called me again and said to go back on gluten so I could have the endoscopy done.I had my biopsy done on March 13. The doc called me a week later and said my biopsy was normal and that gluten was allowed, but I decided to go off of it until my next appointment to see how it would help me. I did notice I felt better!

 

SO NOW: I went to my follow up appointment on April 5th and my doc told me that I had no villi damage but that I had "mild intraepithelial lymphocytes" and that it is possible that I have "early stage celiac or latent celiac". So, besides being angry that he left this information out on the phone a month earlier, I am very confused! He told me I could eat gluten if I wanted to without any harm...

 

(Also, pretty much anything else that can elevate a ttg has been ruled out)

 

So my questions are just has anybody had a similar experience?

 

Will I most likely get villi damage and full blown celiac eventually?

 

Any insight is greatly appreciated!

 

Kristin

[mushroom]

Intraepithelial lymphyocytes are often arn early finding in celiac disease but are not in and of themselves diagnostic.  See:

 

http://www.ncbi.nlm....pubmed/15925840

In borderline cases, the gluten-dependency of symptoms or mucosal inflammation should be shown by gluten-free diet or gluten challenge. No single test is efficient enough to distinguish unspecific increase in intraepithelial lymphocytes from early coeliac disease; clinical history, histology, serology and gluten-dependency should be taken into account in the diagnostic work-up.

 

I feel it is highly likely that you have early celiac.  I would certainly, if it were me, give the gluten free diet a good 4-6 month trial and see if it works for you.

[dilettantesteph]

I found this source which says that intraepithelial lymphocytes are Marsh type 1 "Seen in patients on gluten free diet"

http://surgpathcrite...ease/marsh.html

 

It seems to me like what you would expect to find if you had celiac disease and had been on the gluten free diet.

[mommida]

Because you were gluten free and felt better,  did a gluten challenge for the testing,  You lessened the total amount of damage your body could have had for a postitive test.  During your gluten challenge you probably were very aware of gluten and probably ate less of it.  That you did have what could be considered "early stage" damage from your situation.  It seems like Celiac to me.  (Even though your doctor set you up for getting negative test results.)  I wouldn't keep eating gluten to get bad enough for a stronger diagnoses.

[Takala]

You really need to get written copies of all your test results.  This will help you in the future if another doctor gives you any grief about adhering to a gluten free diet.  What your current doctor is doing is borderline criminal, imo.  He/she is saying keep eating gluten if you want to, because it hasn't damaged you enough yet to reach the state of being able to be "formally" diagnosed.  The same thing as telling a person with insulin resistance, but not diabetic yet, to keep eating lots of junk snack food.  A lot of these docs are reading the propaganda coming from the wheat lobby, the registered dietitians under the influence of such, AND from a certain celiac research center that make it to the popular media, that the gluten free diet is so difficult and unhealthy a fad diet, that it should only be recommended to those who are formally given the Official Celiac Diagnosis, otherwise they allegedly will be missing out on enough fiber, which is going to make them.... fat. They are dead set (pardon the pun) against acknowledging mere gluten intolerance. 

 

Shorter Takala: once testing is completed, don't eat stuff that makes you feel sick. 

[mommida]

This doctor was so ignorant about the testing in the first place.  Try gluten free, eat gluten, test, go eat gluten until more such shows up on test results.  Completely skipping over the fact  the patient feels better not eating gluten!

 

This is like dealing with a split personality.  Or an absolute ding bat that can't keep a story straight.

[frieze]

the doc isn't going to make any more money off of you, if you don't keep eating gluten....