Newbie.. Beta thal minor + iron deficiency.

Hello Everyone!

I am a beta thalassemia minor with iron deficiency. My hemoglobin is usually around 9 even with iron supplements, But i switched to a gluten free diet since the last few months, and now my hemoglobin is 10. (I feel alive again!). Plus a lot of my hormonal issues sorted out themselves too!

My ferritin is almost always low at 10-12. (even with iron supplements since about 20 years).

I have a poor quality of life - with several health issues over the years. (With all due respect to everyone here, sometimes i feel most thalasemia majors can manage a lot more than i can.)

I dont work, nor can i manage housework all by myself.

Anyone who goes through this sort of thing here?

Love n Bless All!
Sunny

Hi Sunny,

Were you diagnosed with celiac disease? Is that why you're off gluten? it's very interesting that your Hb has gone up since quitting gluten. I will like to hear more about how it goes as time passes. Have you also taken B complex and folic acid in addition to iron to counter your anemia?

Is there any relation between gluten and glutathione that is formed by liver and help (directly or indirectly) in blood formation???///

manal

No relation at all. Gluten is the protein found in grains like wheat, rye and barley. Glutathione is an antioxidant made by the body and found in every cell. Gluten intolerance (celiac disease) affects many people and can lead to major dietary changes out of necessity, as all products containing any trace of those grains has to be avoided.

Thanks Andy

manal

Hi Sunny,

Were you diagnosed with celiac disease? Is that why you're off gluten? it's very interesting that your Hb has gone up since quitting gluten. I will like to hear more about how it goes as time passes. Have you also taken B complex and folic acid in addition to iron to counter your anemia?

Hi Andy,

I have been underweight all my life, and always had very heavy menstrual cycles. And nothing really helped. No amount of good food or vitamins or supplements made any difference.

I stress easy so most of my health issues were attributed to it. :-) Or i was told I was imagining stuff.. :-)  You know how it is.

Last ten years or so i developed tons of hormonal issues, Hypothyroid (even then no weight gain), High prolactin, and my LH, FSH, Lipase, etc etc were all out of range. I also Finally got diagnosed a beta Thal minor, but my ferritin is always around 10. My blood pressure was always low, and i am used to body aches, dizziness, and the works! Migraines were also a daily part of my life for years and years! (It is easier for me to mention health issues that I DONT have rather than the ones i do! :-)  )

I also cant really take medicines unless absolutely necessary as i always get terrible side effects. All i can manage is a few baby doses if necessary. :-) Even the iron 'drops' i take are for babies.

Few months back i noticed i started getting loosies everytime i had a pizza. ( I am usually consti coz of iron).

I guess by some fluke i figured out wheat makes me sick right away - though i have had it all my life.


As soon as i cut it out completely, i managed to put on a few kilos, plus my haemo got better! I read later that gluten intolerance also causes malabsorption - that might explain why even good food never helped me earlier. Perhaps now the supplements i take - actually benefit me.


Though my haemoglobin was never above 10, now i am positive that with time, and patience, i maybe able to touch 11-12. :-)


Yes i do take folic acid, iron and b vitamin supplements .


Sunny

Yes, thats me!

:-)

Oops, I deleted my post before I saw yours. It seems that I break a rule by saying the name (I'm very sorry for that, because as a jurist I should know them... )

It's good to see you here. Hmm, there might be a relation with the iron part. I never heard of iron deficiency and allergy for gluten, only iron overload and allergy for gluten.

At the moment I try do to research for a family with a boy of 5 who has a ferritine of 0. Nothing seems to work, but hgb is ok.

I hope you'll find something soon that will work for you. My fingers are crossed for you!

Take good care of yourself Sunny!

Sunny,

I would also highly recommend a minimum of 1000 iu vitamin D taken twice daily (minimum 2000 iu daily). Myself and another member have found that vitamin D can do great things to combat muscle tiredness and it is definitely worth trying. Most people are deficient anyway, unless they get regular sunshine year round. As far as avoiding gluten, read the labels. Even things like salad dressing and mayonnaise may have gluten if they have white vinegar in them. Even trace amounts of gluten can cause problems.

Are there any tests that tell you if you have allergy or sensitive to gluten or not?? Or you get to know by expierence??

manal

You can read about how celiac disease is diagnosed at http://www.csaceliacs.org/celiac_diagnosis.php

Symptoms can be seen at http://www.csaceliacs.org/celiac_symptoms.php

Sunny,

I would also highly recommend a minimum of 1000 iu vitamin D taken twice daily (minimum 2000 iu daily). Myself and another member have found that vitamin D can do great things to combat muscle tiredness and it is definitely worth trying. Most people are deficient anyway, unless they get regular sunshine year round. As far as avoiding gluten, read the labels. Even things like salad dressing and mayonnaise may have gluten if they have white vinegar in them. Even trace amounts of gluten can cause problems.

Thanks Andy,

I do take vit D but I'v been a bit lazy with it.

I forgot to mention one thing earlier- iron keeps me sick as long as i take it. Esp the adult dose supplement pills. For a long time i actually wondered if taking iron makes me have less haemoglobin???  :-)

(After years and years of having doctors tell you you're nuts, sometimes you start believing it! )


With an adult dose pill or two daily, my hgb was always 9 or so. Then i stop the iron totally and I am at 10. At the same time I experimented on and off with gluten free. I guess that sounds like a more logical explanation for my hgb increase? :-)

I started the paediatric iron drops again, but i feel sick again, so am gonna take breaks. If they dont help my ferritin at all, i will just quit iron altogether.

Not sure why or how, but it all seems to maintain itself -  iron + ferritin. The bottom line is I feel fine without iron!


Am just hoping i stay 'better'.  :-)

Sunny

Sunny,

Iron supplements can be very hard for the stomach to tolerate. If you are truly deficient, you should try a high iron diet rather than supplements. Because iron does not seem to help, I would recommend that you have a complete iron studies done and not just serum ferritin, to determine your actual iron status. And I highly recommend twice daily vitamin D. I cannot believe the difference it makes when I skip a dose. I feel so tired and my muscles hurt. If I take it twice daily, I feel normal again and don't want to roll over and go back to sleep when I wake in the morning.

Sunny,

Iron supplements can be very hard for the stomach to tolerate. If you are truly deficient, you should try a high iron diet rather than supplements. Because iron does not seem to help, I would recommend that you have a complete iron studies done and not just serum ferritin, to determine your actual iron status. And I highly recommend twice daily vitamin D. I cannot believe the difference it makes when I skip a dose. I feel so tired and my muscles hurt. If I take it twice daily, I feel normal again and don't want to roll over and go back to sleep when I wake in the morning.

Hi Andy,

Am posting some of my report values here.. for any thoughts you may have. I have done my iron studies done twice before. But it was all very confusing.


(Also this comp gives me terrible headache and eye strain, so forgive me if i have not been neat in my typing :-)   )



haemoglobin - 10.4                      10.1
Erythrocytes count 5.19                5.59
pcv 32   (40-54)                            32.8
mcv 63    (76-96)                          58.7
mch 20      (27-32)                        18.1
mchc 31%    (30-35)                      30.8
rdw 14.10      (11.6-14.6)

iron 64  (37-145)
tibc 411   (228-428)
% t sat 15.57     (13-45)




ferritin 10    11          12



The following were in my thala tests.

rbc count  4.72    (4 - 5.1)
hgb  9.6   (11.5-15)
hematocrit 30    (34-44)
mcv  63.5  (79 - 95)
mch  20.3  (27 - 33)
mch concentration  31.9  (33 - 36)
rdw  15.4  (11.7 - 14)


rbc morphology

aniso 1+ abnormal
poiklo  1+
hypocr 1+
micro 1+
ellipto 1+
ovalo 1+



iron 137  (37-145)
tibc  322  (250 - 450 )
% tsat  43   (14.8 - 32)




hemoglobin A 93.6  (94.3 - 98.5 )

hemoglobin A2  5.5  ( 1.5 - 3.7)

hemoglobin F  0.6  (0.0 - 2.0)

hemoglobin S      0

hemoglobin D    0

hemoglobin C   0

unknown unidentified peak     high 0.7  (0.0 - 0.0 )




reactive lymphocytes seen    6  High (0-4)


hb variant analysis is suggestive of beta thala trait.

Sunny,

I would also highly recommend a minimum of 1000 iu vitamin D taken twice daily (minimum 2000 iu daily). Myself and another member have found that vitamin D can do great things to combat muscle tiredness and it is definitely worth trying. Most people are deficient anyway, unless they get regular sunshine year round. As far as avoiding gluten, read the labels. Even things like salad dressing and mayonnaise may have gluten if they have white vinegar in them. Even trace amounts of gluten can cause problems.

Andy,

The vit D i take is available in a granular form in 1 Gram satchets containing 60,000 IU vit D.

It is a real effort to avoid all traces of gluten..  :-) but am working on it. :-)

Hi Sunny,

The combination of low ferritin, high TIBC and low transferrin saturation suggests iron deficiency but also suggests the possibility that this is caused by malnutrition. In your case, this would possibly be a result of inadequate absorption of nutrients in the digestive system, and from you have recently discovered, gluten intolerance may be the cause. If your attempts to eliminate gluten from your diet results in a higher Hb level, I think you are on the right track and that adding iron supplements may be of no real value, as improving absorption should be the goal. Be careful even with supplements to make sure they are gluten free. I will be very much interested in your progress.