Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Biopsy: Intraepithelial Lymphocytes And Latent Celiac Disease?

KristinIrwin

Recommended Posts

KristinIrwin Apprentice
KristinIrwin
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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

 

Open Original Shared Link

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 Collaborator
dilettantesteph
Posted

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

Open Original Shared Link

 

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 Enthusiast
mommida
Posted

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 Enthusiast
Takala
Posted

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 Enthusiast
mommida
Posted

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 Community Regular
frieze
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.