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

Blood Test Results

Pandoranitemare

Recommended Posts

Pandoranitemare Apprentice
Pandoranitemare
Posted

So according to my test results I am negative for celiac but.... I am very low in iron. This surprised me very much as although I don't eat meat (I do eat fish) I am a bit of a health nut, and eat masses of green leafy veg, dried fruit (all the high iron ones like raisins, figs, prunes etc) beans such as soya beans and kidney beans and I take multivitamins and use protein powder which also is loaded with added vitamins and minerals.

The doctor has put me on iron pills - according to the bottle the 'normal dose' to treat anaemia is 2 tablets per day, I have been put on 3 per day! It's not like I am large, or heavy, I am 5ft 2" and wear a UK size 6 clothes! so there is not much of me to need a bigger than normal dose.

I have to go back in 3 months for another blood test to see if that has fixed the problem.

I was also given some info on Irritable bowel syndrome and some Colpermin capsules to try, for my stomach/bowel symptoms.

The thing is I don't know now whether to go back to being gluten free now or to wait until after the 3 months on iron, because if I stay on gluten and taking the iron does not resolve the problem (if it is an absorption issue), then it gives a genuine picture of things. However if I take the iron AND go gluten free at the same time, then the doctor will just put the improvement down to taking the iron alone.

It also is nagging at the back of my mind that I had gone gluten free for a week or so, and did a 6 week gluten challenge before the blood test, and I worry that maybe I had not eaten enough gluten...as the first thing my doctor asked was if I had been eating gluten at the time of the test.

I don't have the actual results (as UK GPs are not generally happy about actually handing over the numbers).

My feeling at the moment is just to take the iron (and colpermin) and see what happens to my iron level. It would perhaps explain why |I have been feeling even more exhausted than normal!

Has anyone else had similar results/ low iron etc?

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

Celiac.com Sponsor (A8-M):


Christine0125 Contributor
Christine0125
Posted

Did you have an endoscopy or just bloodwork? I know someone that had very low iron due to an ulcer that was found via the endoscopy. She also tested negative for celiac.

Skylark Collaborator
Skylark
Posted

You won't have thrown the bloodwork with only a week gluten-free and the six weeks back eating gluten.

As Christine says, you probably need an endoscopy and biopsies. Idiopathic low iron can be caused by celiac and the bloodwork has about a 20% chance of false negatives.

Pandoranitemare Apprentice
Pandoranitemare
Posted
  • Author

Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

With a family history like that...I'd ask for an endoscope. I was one of the 20-30% that tests negative on blood tests. An ndoscope showed severe damage. If I had stopped at the blood test results..who knows what might have happened?

Pandoranitemare Apprentice
Pandoranitemare
Posted
  • Author

You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

Bubba's Mom Enthusiast
Bubba's Mom
Posted

You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


Pandoranitemare Apprentice
Pandoranitemare
Posted
  • Author

I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

Open Original Shared Link

Thanks for that Bubba's Mom, certainly very informative reading. I have to be re-tested in 3 months, so that will show if the iron has made any difference. I guess I have waited this long, I can wait a bit longer....It took me years to get diagnosis of the other things I have, so I guess I am used to the whole process of going through banging my head against a wall for a long time first :) but I will definitely push the point if the iron issue has not resolved at my next appointment based on the article you kindly found, so thanks very much for that.

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.