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

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.

  • 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. - Jane02 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    3. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    5. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748

    PattyPagnanelli
    Newest Member
    PattyPagnanelli
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
×
×
  • 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.