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 With My Blood Test? Thank You

alesusy

Recommended Posts

alesusy Explorer
alesusy
Posted

First of all thanks everybody for the existence of these forums.

I am still waiting for a firm diagnosis of my celiac disease. I had a gastro on December 3rd and the results should have arrived in 15 days but they are still not ready, because there was stupid Christmas and people in the hospital lab here in Rome (Italy) are not paid for working on holidays. I'll call again on Monday - January 7th! However, I have been on a gluten-free diet since December 2nd. I just would like to be SURE - and I'm getting to be really angry.

So I'm posting the results of my blood tests hoping that you can explain better than my doctor what they actually say. I have looked around on the net and here, and concluded that these results are pretty big indicators that I AM celiac (well, the doctor said as much, but I had not understood why, or maybe he explained and it did not register). But still, I'm sure there are experts around here and I would really appreciate help in understanding.

There are actually two sets of results, the first made in April 2012 and the second in November (why two sets? it's another sad story but I won't bore you with it now. However here in Italy you have to get your bloodwork in a State hospital to access certain benefits) - I'm transcribing the Italian terms but I'm sure they're easy to understand

APRIL 2012

Endomisio AB Anti IgA 1:20 (present =>1:20)

Gliadina Deamidata AA IgA 6,1 (positive >5,5)

Gliadina Deamidata AA IgG 17,0 (positive >10)

Transglutaminasi Anti IgA 46,0 (positive >9, significant >16)

Transglutaminasi Anti IgG 3,8 (positive >20)

The second set of tests in NOVEMBER 2012 repeated without the endomysium

Anti Transglutaminasi IgA 78,9 (borderline >9, positive >16)

Anti transglutaminasi IgG 12,4 (positive >20)

Anti gliadina IgA deamidata 12.5 (positive >5,6)

Anti gliadina IgG deamidata 14,7 (positive >10)

My B12, iron, potassium, sodium levels were in the normal range; the only one out of range is ferritin which was very low at 10 ng/ml (range 15-150)

Now from what I understand, these results are pretty clear (I also notice that the Anti Transglutaminasi IgA got worse from April to November, from 46 to 79...). But I wonder why the Transglutaminas IgG are negative.

I really hope the biopsy results will come in soon. You may tell me I don't need them to know, but here in Italy you have a right to subventions for buying food and free clinical tests if you are a confirmed celiac with a small intestine biopsy to prove it; you are then enrolled in a State hospital program etc etc. Which means anyway I don't feel like a bona fide celiac until I have the results in my hands.

I will be very grateful for your comments

a.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Your tTG IgG (on both occasions) was the only test that was NOT positive. The IgG is normally only the alternative test, run only when you do not produce normal quantities of IgA, which is the main anti-gliadin antibody. Your IgA test results are clearly positive, and even the IgG on the deamidated gliadin peptide was positive on both occasions. I'm not sure why they ran the bloodwork twice, when the first time was clearly positive.

Good luck with your biopsy results on Monday. :)

alesusy Explorer
alesusy
Posted
  • Author

Your tTG IgG (on both occasions) was the only test that was NOT positive. The IgG is normally only the alternative test, run only when you do not produce normal quantities of IgA, which is the main anti-gliadin antibody. Your IgA test results are clearly positive, and even the IgG on the deamidated gliadin peptide was positive on both occasions. I'm not sure why they ran the bloodwork twice, when the first time was clearly positive.

Good luck with your biopsy results on Monday. :)

Hi Mushroom and thank you. I can answer about the double bloodwork, although it's sort of a horror story. I was tested because I had bowels problems we all know about and got scared when I started having pains. The doctor I went to ran a whole panel of test, including a colonoscopy which I asked, and a gastro because I had reflux as well. I have a good medical insurance, so I got them done privately (in Italy you can get all these things in a State hospital for free but you have to wait months). Surprise, surprise, the genius did not take tissue for a biopsy, apparently not even thinking about celiac disease (I sure wasn't). I got also a breath test and I resulted lactose intolerant, which he announced to me in May. The rest of the bloodwork literally sat in the laboratory HE had advised for about two months: I was sure he had seen the results, and since they were VERY expensive I was in no hurry to go and pay. I finally did, at the end of July. Well, I'm no expert but obviously the results were off range. However I thought the values were probably not very important ("IgA" and "IgG" meant nothing to me).

In October I was feeling worse and took up those tests again and called him and then faxed him the results. He then said that yes, the results were positive but since five months had gone by I'd better have the same tests again.

I changed doctor in a hurry and went to my GP who counselled me to go to a State hospital because if I am celiac I have to enroll in a public program to get benefits. Of course, the hospital asked me to re-do the bloodwork anyway because they didn't trust the first results. Then I got the biopsy and there I am, still waiting for the results. Six months wasted. Apart from not eating lactose, which I cannot have for now, but it's probably - I devoutly hope - just a consequence of celiac disease and might regress. Let's hope.

Moral of the story: if you have a GP you trust, talk to him first. I should have done so, but - it's weird - since I hadn't been feeling well for about two years or more, I had been to see him several times for a host of not-feeling-well symptomps, including what I thought was IBS, and he had given me stuff which had done nothing, and I felt ridiculous to insist. And yes, he might have thought about celiac disease, in fact, so it is his fault too. But we all know that doctors are not automatically trained to think about celiac disease...

mushroom Proficient
mushroom
Posted

Yes, at first as a celiac the odds are you will be lactose intolerant until you heal, but after that you should be fine. I was lactose intolerant for years before gluten free. Didn't know anything about anything in those days. Didn't even realize you have to be your own doctor :P I learned bad habits in USA because they don't like that here in New Zealand, you are supposed to say "Yes, Doctor" (especially to the specialists :huh: ) It is considered very nervy to have an opinion different to the specialist :lol: I do trust my GP, though, mainly because she will do practically anything I ask, and is not afraid of losing face by saying "I don't know, let me see what I can find out". :)

nvsmom Community Regular
nvsmom
Posted

Looks quite positive to me too...

What a run around you had to go through with the testing! Ugh! I would be frustrated too. I hope your endoscopy goes well and gives clear results so your dealings with doctors is smooth sailing after that.

When you get your diagnosis, you might want to get your B, D, ferritin, calcium, potassium and iron levels checked. Many celiacs are low in their vitamins which can cause anemia, osteoporosis or other problems. You might want to get your thyroid checked too since about 1/10 of us have Hashimoto's thyroiditis as well. Those tests include TSH, free T4 and T3, and TPO Ab.

Best wishes!

alesusy Explorer
alesusy
Posted
  • Author

Hello again everybody

My results are in and the biopsy - as surmised - is positive. To be more precise I'm a 3b Marsh type.

Doc gave me a whore range of tests to do - gastric mucose, GAD, MOC, antibodies, spleen, check of several organs etc plus bloodwork on the IGG and IGA every 4 months in the first year. He's sure I'll recover in about a year.

Me, even if I knew it already, I'm somewhat in shock. Most of all I'd like to know WHAT I'm going to recover from. The extreme fatigue of the last years, for instance; what about the joint aches I've had - is that getting older, or is it celiac? Am i going to recover something in my eyes as well? Will my skin get tighter? (Is it wishful thinking or is it smoother and silkier now than a few weeks ago?) etc etc

And my main trouble - how am I going to eat when I travel. Well. There is something weird in thinking that for at least a few years (how long?) my body simply hasn't been absorbing nutrients. Already if the fatigue of the last years disappeared it would be great (Yes, I'm feeling better than two months ago, I can measure it in the quantity of things I do every day AND because I don't have any more that feeling of "let's stop and take a breather please", or maybe I should say that feeling of not having enough oxygen going around - sudden fatigue - you know what I'm talking about - But since I'm on leave from work, unpaid leave as it is, I don't know whether that's why)

have a good night, I'm joining the club

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

      High TTG-IgG and Normal TTG-IgA

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

      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....
  • 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):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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.