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

Trying To Understand Blood Test Results


AussieAmanda

Recommended Posts

AussieAmanda Rookie

Hi everyone,

I started posting on here a couple of months ago. As far as I know I am not a celiac but I am intolerant to gluten. The way I discovered this was last October when I was going through extreme stress, I had a bout of what I thought was gastro (my daughter had, had a very bad bout) with terrible abdominal bowel pains, constipation and bloating. A friend suggested going gluten free so I tried it and it worked immediately to change my bowel symptoms.

Between then and now I've had so many symptoms and strange things happening to my body that I won't list them (I listed them in a previous thread). After getting no help from my Doctor, apart from her being willing to test for iron (and found it was low) I decided to find a better Doctor. This was at least 6 months after what I thought was being gluten free (the same Dr told me to continue to eat small amounts of gluten as I may be able to return to eating it one day, so I did, I had gravies or some stuffing and sauces without realising so I've only been truely gluten free for maybe 2-3 months).

My new Dr is a nutrition specialist, she thinks that I am not a celiac but am intolerant. Anyway, she did a lot of blood tests and I am now trying to work out what they mean. From the blood tests she told me that I:

Am low in Vit D

Am deficient in B12

May have hypothyroidism

Need to increase my insulin

My iron levels have increased to 94 in three months (after they were 26)

She will be getting further thyroid results, doing a urine test for something to do with either thyroid or insulin and doing a hair sample test. She has put me on a special magnesium compound and vit D compound.

Before I ask for specific understanding of some of the results I should say that my biggest worry is the symptom of a strange sensation I get mostly on my face and sometimes also on my left knee, elbow, shin and foot. Its sort of like when you are almost over the anesthetic from the dentist and sometimes like a menthol hot/cold sensation. Not so much tingling or numbness although I have also had those.

So, these are the main results I need help understanding:

Thyroid Function - TSH is 3.10

Vitamin D - Hydroxycalciferol - 81 nmol/L (50-150)

Insulin resistance - Glucose/Insulin Ratio - 10.6

Vitamin B12 - 284

I have read a lot about the connection between gluten intolerance, low vit D, B12, iron and even the connection with Hypothyroidism. Can anyone shed any light or tell me whether they think these results would explain the sensations in my face etc... My Dr said to me that she is fairly sure that all my symptoms can be explained through deficiencies and nothing is causing a red flag for her. I have to admit, I am still slightly convinced that I have MS but on the other hand, its probably not. No Dr has suggested this, only my silly brain.

Reassurance is needed.


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



Celiac.com Sponsor (A8-M):



Chiana Apprentice

Having multiple vitamin deficiencies (unless you eat nothing but fast food) tends to point towards celiac disease, so it's good that you're already on the diet!

B12 deficiencies can give you all sorts of uncomfortable tingling and sensation problems, so that's probably what your doctor has in mind. I had problems with an uncontrollable burning sensation for awhile. Have you started to get the B12 shots? If it's a b12 issue, you'll feel better within a couple of months.

Do the sites with the strange sensations ever change color?

Skylark Collaborator

Am low in Vit D

Am deficient in B12

May have hypothyroidism

Need to increase my insulin

My iron levels have increased to 94 in three months (after they were 26)

My, those symptoms sound familiar! You have just described much of the board (me included), except for the insulin as most of us are lucky enough to not be diabetic. Low iron, D, B12, and you're probably not getting enough calcium either. These are totally normal for folks with gluten intolerance and your nutritional status will improve gluten-free. Also if you're Type 1, there is a connection between Type 1 and celiac so it's not terribly surprising if you developed celiac or gluten intolerance.

Neurological problems are not uncommon either. As Chiana says, the low B12 can to it. Also gluten can cause neurological autoimmunity that can do weird things. Going off gluten will help if that's the case. Also, has your doctor ruled out diabetic neuropathy?

AussieAmanda Rookie

Do the sites with the strange sensations ever change color?

No they don't change colour.

My, those symptoms sound familiar! You have just described much of the board (me included), except for the insulin as most of us are lucky enough to not be diabetic. Low iron, D, B12, and you're probably not getting enough calcium either. These are totally normal for folks with gluten intolerance and your nutritional status will improve gluten-free. Also if you're Type 1, there is a connection between Type 1 and celiac so it's not terribly surprising if you developed celiac or gluten intolerance.

Neurological problems are not uncommon either. As Chiana says, the low B12 can to it. Also gluten can cause neurological autoimmunity that can do weird things. Going off gluten will help if that's the case. Also, has your doctor ruled out diabetic neuropathy?

My Dr said that I'm not a diabetic yet but that I'm at risk for it later in life. She told me I should be doing weight resistance exercise to increase the insulin levels. On the test results it also says:

Glucose fasting - 4.1 and then 'diabetes unlikely'

I think all this means that I don't have diabetes yet but that I could develop if I don't get on top of things. I should say, I'm not at all obese, I weigh somewhere around 63kg.

I have been eating gluten free for the last 6-8 months so not sure why I still have these deficiencies. The thing I thought of was that when I went gluten free I stopped eating properly, mainly due to not knowing what to actually eat. The fact that my iron went up once I started to take a low dose supplement and increase iron rich food intake indicates to me that my digestive system is now absorbing nutrients again. I have not been working on increasing anything but the iron though as I wasn't aware of the other deficiencies.

The thing I don't understand is the TSH levels.

Also, do you all agree that thats a low B12 level? On the test results it says 'within normal range' however my Dr pointed out that she thinks its low for me and that other Drs may say its fine but she doesn't agree. I also heard that in places like Japan, if your B12 is below 500 they treat you!! How can Australia have such a different reading? She has not given me shots yet as she wants to wait until all the testing is complete and then work out a proper course of correcting it all.

karisamh Newbie

I will also say that many times people with Celiac also become diabetic or pre diabetic. Again it is because your body isn't getting the nutrients it needs (one of those being sugar).

AussieAmanda Rookie

Do you know if it can be prevented or reversed?

AussieAmanda Rookie

I got some further Thyroid function results that I don't understand so if anyone can shed some light I'd appreciate it:

TSH - 3.10 (0.5 - 5.0)

Free T4 - 17 (11.0 - 21.0)

Free T3 - 5.5 (3.1 - 6.0)

TPO ab - 152.0 (<34)

TG ab - 609.8 (<115)


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I got some further Thyroid function results that I don't understand so if anyone can shed some light I'd appreciate it:

TSH - 3.10 (0.5 - 5.0)

Free T4 - 17 (11.0 - 21.0)

Free T3 - 5.5 (3.1 - 6.0)

TPO ab - 152.0 (<34)

TG ab - 609.8 (<115)

You seem to have Hashimoto's thyroiditis. Didn't your doctor tell you this??? It's an autoimmune disease that causes hypothyroidism. I have it too. The TPO (thyroid peroxidase) and TG (thyroglobulin) are the autoimmune antibodies and you have both kinds. Do you have access to a good endocrinologist?

Hashimoto's isn't a huge deal, but it can cause you to go back and forth between hypo- and hyperthyroid until there is enough damage that you're permanently hypothyroid. Usually Hashimoto's is treated by giving thyroid hormone so the thyroid gland is less active. It tends to lessen the autoimmunity and treats the hypothyroidism. There is no cure, but you can live a totally normal life on thyroid hormone replacement.

Your TSH and the rest of the levels look pretty good, though some people are saying TSH above 2.5 is a bit high. You really need to get an endocrinologist looking at the whole picture.

AussieAmanda Rookie

The Dr didn't have these results when I saw her so she phoned for them to be sent. I think she would have received them today too. My Mum has Hashimotos apparently too althought she said something about the last Dr she saw wasn't sure. I've phoned the Dr to see if I need to come in before my next visit. Next visit will be end of July after I've done the other tests. Do you know if this is at all related to gluten intolerance?

Skylark Collaborator

Autoimmune diseases cluster, and there is an association between Hashimoto's and celiac. Going gluten-free sometimes helps people with Hashimoto's. There is one autoimmune disease expert who says all people with Hashimoto's should go gluten-free because it helps so consistently.

Open Original Shared Link

AussieAmanda Rookie

Only according to my Dr I'm not celiac, just intolerant. My Mum tells me that she is not yet on pills for her Hashimotos after 6 years so maybe I won't have them right away. Its very interesting that there is a connection. Thanks so much.

Skylark Collaborator

Only according to my Dr I'm not celiac, just intolerant. My Mum tells me that she is not yet on pills for her Hashimotos after 6 years so maybe I won't have them right away. Its very interesting that there is a connection. Thanks so much.

Blood tests are negative in up to 30% of celiacs. Don't be so sure you're not celiac if a gluten-free diet makes a huge difference. ;)

AussieAmanda Rookie

Blood tests are negative in up to 30% of celiacs. Don't be so sure you're not celiac if a gluten-free diet makes a huge difference. ;)

When my original Doctor did the test she did it when I'd been gluten free for three weeks. I told her this and she still did it. I don't count that test at all because of course it was going to be negative. I don't think this Dr is planning on testing me again as yet.

beachbirdie Contributor

There are some doctors who believe that once a person has been diagnosed with Hashimoto's, they should start treatment. I'm not a medical professional, so I can't opine in one way or another, just saying that's some of the wisdom that's out there. Are you having anything you might think is thyroid related?

I have Hashimoto's and had hypothyroid symptoms long before my labs ever showed my thyroid hormone levels to be low. I am now treated to keep my TSH suppressed and I've felt much better since doing that.

Your thyroid hormone levels are not too low, your TSH not terribly high, but the number of antibodies makes it certain that your thyroid is under attack.

I am just learning about the autoimmune thyroid/gluten connection, and am starting to take it seriously. I found some research out there, though I haven't had time to dig deeply enough to assemble plenty of credible information, that the DQ2.2 gene that I have (suppsedly very low celiac risk) is also connected with autoimmune thyroid.

A good source of information on Hashimoto's is Chapter 8 of Open Original Shared Link, an online textbook by endocrinologists for endocrinologists. It is a challenge to slog through some of it, but it's very informative. According to thyroidmanager, there is a small percentage of Hashimoto's that goes into remission.

I wish I'd known about the gluten connection when I first was diagnosed, I'd have tried to beat back the thyroid disease by going gluten free. Oh well.

good luck to you.

beachbirdie

  • 2 weeks later...
AussieAmanda Rookie

Thanks for that info. I got my test results for the urine analysis yesterday and my iodine level is 79. It says that its only mildly low so not sure what that means. I've been eating a lot more fish and finding my face is actually stopping the strange sensations, well they are reduced anyway.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    3. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.