Thalassemia minor and celiac disease in children

Thanks Andy. Will surely go through.

Kiya

Hi Andy,
              My dauther is thal major and my son is thal minor . My son is 8 years old . Lately i am observing that his growth is becoming slower than kids at the same age and also his eating habits changed like he does'nt like to eat or most of the time its forced eating . We are not giving any medicine like folic etc to him since his HB is maintained at 11 . He has acquired 619 BP deletion mutation from his mother .

Pls tell me about growth and what precautions we need to take .medicine etc.


regards
MA

MA,

We hear this often in regards to the appetites of thal minors. I suspect it is related to hemolysis, the breakdown of red blood cells (RBC's) that occurs in all thals, including thal minors. The rate of hemolysis is lower in minors, but the small irregular RBC's produced do not last as long as the good RBC's, so the rate of blood turnover will be higher in minors than non-carriers.

We constantly hear form parents who do not know what to do. What we need to hear more of is from parents who have found solutions to improve the appetites of their children. I would suggest a diet high in antioxidant foods and unsaturated fats and low in saturated animal fats. Cook in vegetable oils only and never in animal fat. Tea, nuts and milk and milk products may also help to stimulate a better appetite. I would also suggest a daily natural vitamin E supplement to help counter the effects of oxidation.

Parents, what suggestions do you have? This problem seems very common, so some of you will have some ideas and suggestions.

Hi everyone and Andy,

3 months are over and I did my daughter's blood tests. The reports are given below:

HB 9.0 same as 3 months before
Iron serum 43, 3 months before it was 187
Ferritin 31.2, this is done first time
TIBC 341, first time test
%transferritin saturation 12.6%, first time test

Other results of CBC similar to as she always got. She is a thal minor.

When her iron serum was 187, i had given her a diet with lots of goat liver often which increased her iron in 2 months time only from 49 level. After this, since last three months, she was mostly on vegetarian diet along with eggs as she resisted to have liver. So, i thought that she could sustain with healthy veg diet containing lots of greens, fruits, eggs, lentils and almonds etc. She is on a strict Gluten free diet. Dr had also continued with iron supplements and folic acid. Now, these reports leave me completely dejected because it is difficult to make a 5 yr old eat healthy food and less of junk food and then also reports not good. My specific questions are:

1. She is on iron supplements since 7 months now and Hb increased from 7.6 to 9.0. Now, it is maintained at 9.0 since 3 months. Do we have chances of seeing it increasing further or she is stabilizing at this level?

2. Is the iron supplement she is taking acting against her iron absorption? Has anyone ever gone through this?

3. Will she have to again go back to goat liver diet to increase her levels, i know it will not be good in the long run?

4. At such small age, she has long school hours  and she doesn't get a chance to take a nap in between, though i try to give her a 10 hr sleep in the night. Is this hindering her HB increase?

My thanks to anyone who could reply to me with his or her experiences.

Thanks
KIya

Hey Andy,

Please reply to my post. Am completely nervous and out of help and panicked. I am sure your reply will show me some light in the right direction. sorry for being impatient. I feel i will only get some diseases trying to grow up my little girl. I feel so unwell and nervous 

Thanks again
Versha

Hi Kiya,

1. There is no way to predict where her Hb will ultimately reach. Thal minor by itself can't be predicted but with celiac also involved, it will depend greatly on how well the celiac disease can be managed. I believe it will probably rise more as she gets older as long as her diet is well managed. This is really a lot of trial and error and patience is needed.
2. I am not in favor of iron supplements in general. They tend to cause stomach bloating, interfering with the appetite. I much prefer diet, and as you saw, a food source (liver) worked best. I would actually suggest stopping iron for a few weeks and see if she cooperates with eating a healthier diet. From her iron tests, her current levels are OK but have dropped and her iron stores seem low, so she does need to get iron in her diet. See the thread at http://www.thalassemiapatientsandfriends.com/index.php/topic,2415.0/highlight,iron+rich+foods.html for a list of iron rich foods. You can see from this list why liver works so well. I am a vegetarian and was able to reverse severe blood loss caused anemia by diet alone. I tried iron tablets and I could not eat because my stomach felt full all the time.
3. Try other foods first and realize it is a slow process unless you are eating foods like liver. It took me six months on an iron rich veg diet before I could work full time again. Since her iron stores remain low, if she is willing to eat liver once in awhile it will help.
4. Her experience is common with thal minors. Many say they could use a daily nap in the afternoon but this is not often practical. I don't think this directly affects her Hb but it will affect her appetite and bodies need adequate rest to grow so the long day will have some effect. I don't know if it's feasible for her to have a nap at school. You might want to talk to the teacher and explain that because of her dietary issues, her energy level is limited, and you'd appreciate it if you were informed if she has any trouble keeping up in school, and also ask the teacher to make sure that your daughter doesn't try to overdo things. It's best to make allies of the teachers and involve them in some way, as this will give them a better understanding of her health and limits and recognize when the fatigue of anemia has set in and that trying to push then is futile.

Hi Andy,

Thanks a ton for your reply. I am game to your suggestion of not giving iron supplements and get the stores back with diet itself. She has long school hours which adds a little constraint in managing her diet well. But, i am going to try this hard. She is ok to get back to liver and the start has already happened yesterday. Dr has adviced 1 folic acid tablet (5 mg) twice a week. Is this ok? She has also added a b-complex syrup. I did go through the thread of iron rich foods and will try to make use of it.
My dr says that her celiac thal minor patients have gone upto hb levels of 11. That is the levels she is hoping we must also touch , hopefully one day. 

Thanks a lot, Andy once again. Going through all this, my learning is that we have to take charge of our health and cannot rely on Doctors completely, though i am lucky to have a good doctor.

Thanks again
Kiya

Hi,

I am back again. This is more related to Celiac and antibodies than thal perhaps. My daughter's anti TTG Iga levels are again very high 291 (0.5 - 20) ref range. they are almost similar to her results 7 months back at the time of diagnosis. She is a b thal minor. My question here is :
This test anti TTG IGa gets all the antibodies in the body rather than only gluten related antibodies. Someone told us that thal minor also could be responsible for antibodies in one's body which might be interfering with the results. Is this true and if yes, what are the facts?

I am struggling back and forth in thal and celiac trying to settle on both the sides...any clue here would be highly appreciated.

Thanks
Kiya

Hi all and Andy,

If you have any knowledge regarding my query, please do get back.

Waiting eagerly for any reply,
Thanks
Kiya

Hi Kiya,

I think that the person who told you that was confused with thal major where transfusions add new antibodies to the recipient. What I did find is that hemolysis can interfere with Detection of Anti–Tissue Transglutaminase Antibodies in Celiac Disease, http://www.clinchem.org/cgi/content/full/56/6/1034
Hemolysis is a feature of thal minor and it can actually interfere with detection. There is no mention of false positives, though when it comes to thal minor.

Hi Andy,

Thanks a lot. We as parents are only worried about the correct diagnosis. My daughter did have 2 bouts of ataxia last year before her diagnosis. We are not sure what is inside her that is not fine. All her deficiencies got corrected since the time we have been on Gluten free diet and growth has been excellent. But, when anti TTG Iga test results came, they were alaming, so we got worried. We have gone super gluten free at our home now. Hoping to get better results next time.

Thanks again for your help. We are lucky to get in touch with you and this forum.

Kiya

Kiya,

When you list your iron results you might want to list the metrics as well as the lab ranges.  From what I can see, transferrin saturation is very low, it is supposed to be around 30% in healthy individuals, while thal minors usually have it higher than that.  Ferritin is also very low as well.  These two markers are much better to give idea about the Iron storage levels for a longer period of time than serum iron.  Please actively address the iron deficiency and the celiac condition and I am sure your daughter will improve.  Good luck.

Hi Kiya

TTG Iga test results being so high show there still gluten in the diet.   So good luck with your label reading.

http://www.celiacsolution.com/createing-gluten-free-environment.html

Hope the attached helps.

Regards

Catherine

Hi im thal major and have coeliac. Ive noticed when i wasnt on diet my ferritin was going down which is great but now im on it its going up.

I dont know if theres anything ic an help u wiht? but i do notice i have a lot of deficiency in vitamins

Kiya,

When you list your iron results you might want to list the metrics as well as the lab ranges.  From what I can see, transferrin saturation is very low, it is supposed to be around 30% in healthy individuals, while thal minors usually have it higher than that.  Ferritin is also very low as well.  These two markers are much better to give idea about the Iron storage levels for a longer period of time than serum iron.  Please actively address the iron deficiency and the celiac condition and I am sure your daughter will improve.  Good luck.

Hey thanks,
Will definitely try to actively take care of her iron deficiency. Experience teaches us a lot of things. Will take care.

Thanks again