Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

I Got Emily's Gi's Medical File.


Jodele

Recommended Posts

Jodele Apprentice

OK I had to go and get Emily’s medical records today. We are having problems getting blood test done for my other two kids. Our family Dr. can not find what lab to use because the labs they use do not have the celiac panel there. So I had to call the GI office and ask them what to do. They faxed there lab test to the family dr. Still waiting on that. <_< Anyways, I went to the family dr. to get a different lab request for my middle child for testing her thyroid because she is a big girl and my dh has low thyroid. While I was there I ask for a copy of the blood work that the gi did on Emily and the nurse said that they did not have them and they had been trying to get them. I thought this was funny because our nurse showed me what they got form them and it was a statement from the gi dr. and did not memtion the last test that she ran on Emily. I ran down town to go to the children’ s hospital to get Emily’s record. This is what I got.

In 2000 blood test

Antigliadin IgA 9.0

AntiGliadin IgG 50.2

AntiEndomys IgA Negative

AntiTissTran IGA 2.3

Total Serum IgA 0.73

In 2006 blood test

Anti-Gliadin IgG 20.7

Anti-Gliadin IgA 0.4

TTG IgA 4.3

Anti-Endomysial Positive

IgA serological markers for celiac disease detected

] Celiac disease is highly likely

Then Emily biopsy states this

The clinical impression of celiac disease and the results of the serology evaluation are noted. Two of the biopsy pieces appear well oriented and demonstrate the expected villous-to-crypt ratio and normal villous histology. One portion of the specimen consists predominantly of superficial villous structures which do not show increased intraepithelial lymphocytes. CD3 evaluation of the density of intraepithelial lymphocytes is not further contributory.

Immunohistochemical study with appropriate positive and negative controls perform:

CD3: No significant increase in intraepithelial lymphocytes, 25 or less IEL/100 epithelial cells.

If anyone knows what the biopsy means please tell me I have no clue. :unsure: They took 4 biopsy also. Thanks

Jodele


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



Celiac.com Sponsor (A8-M):



2kids4me Contributor

The clinical impression of celiac disease and the results of the serology evaluation are noted.

[ This means the pathologist actually read the lab results showing blood evidence of celiac disease]

Two of the biopsy pieces appear well oriented and demonstrate the expected villous-to-crypt ratio and normal villous histology.

[means they looked normal and the villi were not blunted - they were the right height and appearance at a cellular level]

One portion of the specimen consists predominantly of superficial villous structures which do not show increased intraepithelial lymphocytes.

[means they looked for evidence of lymphocytes in the villi - this would be an indication of immune mediated attack from a type of white blood cell responsible for immune mediated disease, superficial just means the surface of the intestinal wall where one would expect to see lymphocytes in an autoimmune process]

CD3 evaluation of the density of intraepithelial lymphocytes is not further contributory.

They did a special examination (stain or type of microscope) to make sure they didnt miss anything - the extra step did not "contribute" anything= no abnormalities

Immunohistochemical study with appropriate positive and negative controls perform:

CD3: No significant increase in intraepithelial lymphocytes, 25 or less IEL/100 epithelial cells.

[There is a special way they can stain/look at a slide that will highlight cells with high levels of immune markers - and nothing significant found]

In the end - the biospy was normal but the pathologist has noted that the lab results are consistent with celiac - so technically from a pathologists's point of view , he cannot say - no evidence of celiac because although the biopsy was negative, the lab work says celiac. Just not damage to villi yet.

Hope this helps. We have to read pathology reports daily at the vet clinic and it is easier if you know all the mumbo jumbo they have to write - just to say - we looked for everything but it was neg.

Go with the blood work, dont wait for the damage to show up, no need - the results speak for themselves

If anyone knows what the biopsy means please tell me I have no clue. :unsure: They took 4 biopsy also. Thanks

Jodele

Jodele Apprentice

Thank you very much!!!! I needed the plan english form of that. :P Now if it was about electronics or computers I could do that with no problem. :P Yes I was going to go off the blood work and she is gh now or trying the hardest right now. I am getting my other 2 kids and myself tested next week hopefully. Then the whole household with be gluten-free. Why I was asking is that we are having problems with the gi dr. here. My family dr. has been trying to get the results from the gi dr. and could not get what they wanted. So I went and got it today. You would not beleave what the gi dr. sent to my family dr. It was a statement about Emily and It was about the first time they tested her for celiac and not anything about the secont blood test they did. I don't like this dr :angry: but there is only 3 ped gi dr. here in okc and they all work out of the same office. I don't know if changing dr would help. If you were wondering why I waited until this year about this result because the gi dr never told me about the first blood test and Emily was just treated with reflux. The past year she had been getting worse with the stomic pains and ds. So we went back to the gi doc and thats when she said that she had a marker for celiac and now the dr said that she is not going to dx with celiac yet and wants to see her back in 6-8 months to see if there is any change with a gh diet. That was after I said I was going to put Emily on a gluten-free diet. :P I wish I know this 6 yrs. ago so that emily would not have to go though all the pain and would have been growing more. She is so small for her age. She wieghs 40lb and 46in tall. Thanks again for the enlightment of the pathology report. :wacko:

Jodele

2kids4me Contributor

I would just ask your doctors office to request the most recent blood work. Be nice and say - oh its good to see the GI sent you the first report - can you ask for the more recent one as that has higher levels - thanks.

It may not be the GI , so much as the receptionist that sent the outdated report

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,810
    • Most Online (within 30 mins)
      7,748

    Becky103
    Newest Member
    Becky103
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...