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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.