Gall Bladder health in thalassemia

Gall bladder issues are common in thalassemia major.  It is important to be able to recognize the signs and symptoms of gall bladder disease include: pain or cramping in the upper right hand quadrant of the belly, gas, cramping, indigestion - and others.

It may be a good idea for thalassemia patients to do a gentle cleanse - especially children under the age of 14 - in order to avoid gall bladder disease or gall bladder removal surgery.  

Little A was experiencing pain in his belly in the region mentioned earlier.  An ultrasound showed 'sludge' in his gall bladder - but no stones.  The ER doctor suggested gall bladder removal surgery.  We spoke with our family doctor and he is strictly against removing the gall bladder.  He has put little A on a cleanse to help clear up the sludge so that the gall bladder can function properly.

In these two days I have noticed an improvement in my son's energy levels, mood and general health.  He is currently eating very basic foods - his diet is completely vegan.  He is eating a lot of greens, he is taking an alfalfa supplement twice daily for 3 days.  He is having fresh lemon and lime juice frequently, mineral salts and olive oil.  He is eating plenty of fresh, raw fruits and vegetables - and only brown rice products for grains.  We will do another ultrasound in a few weeks to see if the sludge has cleared up.  Once the sludge is cleared we will add the foods we have eliminated slowly back into his diet.  If any of them contribute to his digestion problems we will know which foods are the culprit.  

Remember - this is generally a good rule for all people - but thalassemia patients in general - please please eat every 2 to 3 hours - not eating for long periods of time may cause gall bladder disease.  Eating frequently is important for general well being, the gall bladder and balancing blood sugar levels. 

I will continue to update this thread so that others can learn from our experience.  This is important for both gall bladder and liver health.

Sharmin

Thank you Sharmin for this very important update. My son has some gravels in the gall bladder and I always wondered if anything could help rather than removing

I assume that there is no fats in his diet too, right??

Manal

Manal,

For the time being we there is no fat in his diet.  This method has been known to dissolve stones as well. Tumeric is also very helpful in cleansing the liver and gall bladder.

Best of luck.

Sharmin

Thanks dear , please keep updating
Manal

Thanks for sharing Sharmin,you are insightful as always,Lil Z often experiences stomach pains but her ultrasounds every year came back normal so i never thought of it,but i think this time i am gonna ask the sonologist to look into it too.

I am glad Lil A is feeling better now.

We had an appointment with the surgeon today.  Because lil A hasn't had any issues in over a month the surgeon feels that he may not require surgery.  We will be waiting and watching for the next little while but we hope that everything will be fine. 

We, and the doctors feel that the cleanse may have been very helpful.  Once again outlining the importance of diet and supplementation in thalassemia. 

Sharmin

My gallbladder and I are more than 20 years divorced so I cannot talk with him about that anymore 
Sharmin, why do you mention liver health only at the end of your post? What has it to do with a galbladder issue?

Dore,

The liver, pancreas and gall bladder are related and the health of one organ can influence the other.  Cleansing and eating a proper diet can improve the function of both the liver and gall bladder.  Since the liver often stores iron and can be affected adversely in thalassemia - anything that enhances liver health is beneficial in thalassemia, sickle cell anemia PKD or any other blood disorder in which you may require blood transfusions. 

Did you have gall bladder stones, Dore? 

Sharmin

Hi Everyone
Long Long time,

Life is good and beautiful, Prat is doing well. He did a beautiful play in Singapore(Rabindra Nath Tagore's Play - The post office) in which he played the lead role of a child suffering from a life threatening disorder. He did a fantastic job and has won many accolades for the same.

As for his hb  he is sustaining between 7 to 8.3, it did go to 6 and he got a couple of transfusions. All other parameter's are undercontrol only his indirect bilirubin is always high.. which is quite evident in his pallor.

Wheat grass , folic acid and vitamin E continues. i stopped Hydro oxyurea almost a year back cos I did not see any increase in hb with it after a certain amount of time and then decided to see how he does without it.

Recent ultrasound shows Gall bladder stones multiple. Docs in S'pore say that we should wait till the symptoms surface.

Dr marwaha is of the opinion to monitor HB , cos Gall  stones bring down HB.

Will appreciate your advice on it.

Lots of love and blessings to all

Puja(Mother)

Hi Puja,

I have a question about Prat's use of hydroxyurea. Do you know if there was any change in the percentage of HbF in his blood while he was on hydroxyurea? I ask because two aspects of hydroxyurea should be monitored. A direct increase in Hb is hoped for, but a stable Hb level with an increasing HbF percentage also has great value, in that it reduces ineffective erythropoiesis, which in turn means fewer bad red blood cells to be filtered by the spleen, which also leads to a decrease in bilirubin levels and hopefully, fewer gallstones. I feel that if there is a significant increase in the percent of HbF, even when total Hb does not rise, that hydroxyurea has value by reducing ineffective erythropoiesis.

How is Dr Marwaha doing these days? And did you feel that FPP had any noticeable positive effect on Prat?

Sharmin, I had stones. I had my spleen removed at the same time. I was not only three when that happend. Despite my young age I have memories of it. It might be other memories, but I do know it. It was in the time they thought pain medication/treatment was bad, you see.

Hi Andy

It has been a year since we stopped Hydrooxyurea, as there was no sustained increase in HB and Prat was using Hydrea for more  than 5 years.  His hb has still remained at the same levels even after stopping hydrea. As for the Bilirubin he has always had a highbilirubin. There are phases when you can make out the eyes are more yellow and then it becomes alright.

Gallbaldder stones - we just found out and right now S'pore Doc says we should wait and watch. I am ot sure if there could be a correlation with not taking Hydrea and Gall bladder stones.

As for his HBF yes there was a significant increase when he initially started. FoetalHB did increase.  ut eventually his FBC was checkeed we never checked Foetal hb on a regular basis.
Since his spleen was taken out I am not sure abt Ineffective erythropoiesis also. Haemolysis has always been there.

Regards

Puja




As for

Hi Everyone,
Just wanted to give a quick update on Olivia ....She is doing so well right now. She is transfused every three weeks and getting 400cc's of  washed irradiated blood. Her ferritin ranges from 600-880 and she is taking 500mg of Exjade a day in orange juice. She has had her yearly visit to Oakland this summer and all went well. When we were there, the SQUID was not working so she had a liver MRI here in Arizona and it was within range. Her nurse called me yesterday and advised me that there are currently 21 patients with Thal a t Phoenix Children's  Hospital and all of them are transfused except for one, so they are now going to start a comprehensive care clinic here. Olivia will begin to see and Endo this year as well (On Oct. 18th).
So overall she is doing good, the only thing I have noticed and talked to her doctors about is that at school she would have headaches. We decided that is was probably due to minor dehydration and the heat ( it was 105-115 when school started here). So her teachers makes sure she drinks alot. Her teacher also encourages her to talk to her classmates about where she goes when she is not at school and also to talk about her thal and they are planning to have a little class fundraiser for thal. My family and I are starting to take a healthier approach to eating and we are adding alot of greens to our diet. I was wondering if this would be ok for Olivia as alot of the food are rich in iron. ....Also on last thing....My sister is pregnant with her second child. She and her husband are carriers of thal trait. So one day they were over and we were talking about their concerns about the baby having thal and Olivia was in the room to and she turned to my sister and said " Aunt Kim, I have Thal and I am fine so don't worry about the baby". That made me realize that she has such a good attitude about her Thal and among other things, that she is such a strong little 7 year old ! I just love her so much!
Hope to talk soon,
Kathleen 

Hi Kathleen,

It is OK to eat foods like spinach. Even though it is considered high iron, the non-heme iron in plant foods is not as readily absorbed as the heme iron found in foods like red meat, so it isn't really as high as it looks. Drinking tea with meals also reduces the amount of non-heme iron absorbed, plus tea is an excellent antioxidant, so this may be something to think about as she is getting older. Even with red meat, the amount of iron absorbed is minute compared to the iron in a unit of blood. The standard of care guidelines say don't worry about the iron in food when you're transfusing. I also want to suggest that if she is drinking a lot of fluids, she may need a bit extra salt, as this will help prevent dehydration. I worked outdoors in Florida and always took a salty snack with me to make up for the dilution that comes with drinking a lot of water.

Silly question.... are gallstones also a complication of Thal. Minor/Intermedia???