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

Help, please, with blood test interpretation


Deades

Recommended Posts

Deades Contributor

Quick back story:. I was diagnosed June 1 after having an endoscope looking for a stomach ulcer.  It was totally by chance the celiac was discovered.  My regular doctor prescribed the scope but did not do the test.  Another doctor in the practice did it and told me I had celiac.  I had my kids tested before they went back to college (both are negative) and my doctor asked my daughter why she thought she had celiac.  She said because her mother had it and then he asked who told me I had celiac.  He doesn't think I do.  

Results of the scope:. Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

i had no physical symptoms but malabsorption issues.  My iron level was 37 and ferritin was 10.2 from blood work November 2016.

just got results from blood work done September.  Iron level is now 147 and ferritin is 86.1. 

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.


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



Celiac.com Sponsor (A8-M):



Gluten-free-01 Enthusiast

Well, if I were in your situation, I would ignore the doctor who says you don’t have celiac and trust the other one who says you do. There are doctors who just don’t get it! As for the results of your endoscopy, it's very unlikely that you don’t have celiac, in my opinion. If I understand it correctly, your iron and ferritin levels went up thanks to the gluten free diet, right?  

Deades Contributor

Yes, iron and ferritin went up significantly.  Is it possible is set some gluten?

Gluten-free-01 Enthusiast
14 minutes ago, Deades said:

Is it possible is set some gluten?

What do you mean? 

Deades Contributor

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

Ennis-TX Grand Master
21 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

Yeah, it will. The antibodies will flare in the background for weeks up to a month and damage your intestines from even the smallest crumb. Consistant abuse like this will keep damageing it and cause more health issues in the long run. We did not know about mine for years and I ended up with a secondary AI issues a whole list of food allergies, and I can not eat most foods now.    We had another member who ignored their celiac....long story short stuff went bad and they had emergency surgery after which ended up having to use a bag for the bathroom.  We had another member who got cancer and passed away.......I think someone else can link you the post to these. This is not a disease to joke or mess around with it is a life long commitment.  

PS there are plenty of gluten-free options for EVERYTHING now even hot pockets. Stick to gluten-free now and you can still eat them. I can not even consume those anymore due to my damage here is a fun list. https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Jmg Mentor
5 hours ago, Deades said:

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.

I took a look at your other posts. I'll summarise for others reading. You didn't have the celiac blood tests but were diagnosed via an endoscopy. You also have anemia and osteoporosis I think?

Your doctor doesn't think you have it. Another doctor thinks you do. The questions you're asking suggest you're at least unsure and you seem to be asking for permission to break the gluten-free diet?

There are sadly no half measures. If you have celiac and have occasional gluten you're potentially opening yourself up to very serious health consequences. 

The answer is to either accept the celiac diagnosis and live accordingly or seek further testing. Which would mean a gluten challenge, blood tests and then perhaps a second endoscopy. Given the villous atrophy and apparent positive reaction to the gluten-free diet I think you should accept the current diagnosis but it's a decision only you can take!

Best of luck :)

 


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



Celiac.com Sponsor (A8-M):



Gluten-free-01 Enthusiast
46 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

I can only confirm all that has been said.

Yes, you will harm yourself if you do that. The absorption issues are physical symptoms! Please, try to learn a bit more about celiac.. this forum is a good source of info, for instance. The gluten free diet has to be strict - 100%. Cheating wouldn't pay off because the villi in your small intestine would never get a chance to heal and recover. The function of the villi is that they absorb nutrients - celiacs have damaged villi and that's why they can't absorb nutrients properly (this can result in iron deficiency/anemia by the way - as in your case). Once a celiac goes gluten free, their villi start to heal and this has a positive impact on the body as a whole.

There is a lot more you can learn about celiac - you don't have to read scientific research articles, but please do read basic info that is available.

RMJ Mentor

Yes you will hurt yourself eating gluten even if you don't have symptoms, although I'd call malabsorption a symptom.  

Some doctors don't seem to think Celiac is real. A doctor I was seeing for something unrelated to celiac recommended a test where radioactivity could accumulate in my small intestine.  I asked if it would harm my intestine because I have celiac.  His response "You probably don't have that".  He said that with no evidence whatsoever.  I'm skinny so I actually look like what doctors think a typical celiac should look like.  I was able to respond, "well I just had a positive biopsy last week."  He never apologized.  I declined his test.

Thank goodness we can treat this disease ourselves by diet without needing a doctor to write a prescription.

Deades Contributor

Thank you all.  You have confirmed with what I thought and I feel better going to my doctor on Wednesday.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...