Sugar (fructose/sucrose)intolerance and Celiac?

Tammy - posted on 01/23/2009 ( 8 moms have responded )

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My 2 year old daughter has had mucous/bloody diarrhea since about 9 months of age (when she weaned herself from breast feeding) that her GI dr. has tied to a sugar intolerance (sucrose/fructose-both table and fruit sugars). He says that this is very common in celiac disease. She had the biopsy of the small bowel done in July, and he stated it was neg. for celiac. The blood work that was done did indicate celiac, including an extremely low IgA level (8). Nobody in my family (or my husbands) has ever been tested for/shown signs of celiac disease, but my middle daughter has an immune difficiency (low IgG and IgA). Given this information, the GI dr. says the feels my daughter must have just a sugar intolerance with immune difficiency. But she has frequent (constant) mucous/ diarrhea stools, bloated belly, gas, acid reflux, and won't eat most of the time. I am very confused because I am reading that the biopsy can sometimes be wrong. Should we pursue the celiac angle? Is there a more diffinitive test than the biopsy? Does anyone else suffer from sugar intolerance with celiac? Thanks, we would really appreciate any ideas anyone had. --Tammy

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Wendy - posted on 05/18/2009

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Sounds like my daughter's problems. She has seen several Gi specialists including a guy touted to be the best in his field, who specializes in sugar disorders in children. My daughter was diagnosed with Celiac and a disaccharide deficiency. But, then a second test has said that she is negative. She still gets vomitting and diarrhea from sucrose and fructose, mostly from too much fructose. So I avoid fructose, but be wise that sucrose breaks down into fructose into the intestine so that it could always be the problem. She does well as long as her diet is restricted and I aviod more tests and inconclusive results from doctors who can't seem to answer my questions. I wish you the best in your search for answers

Tammy - posted on 05/15/2009

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Hi Tammy I totally agree with Ranee a Naturopathic specialist is who diagnosed my son at the age of 3, he is now 5 and still releasing the mucus from the gluten build-up in his small intestines which shows up as a loose cough usually in the morning so wew do a gentle colon detox every now and then, it helps alot! Tammy from Florida

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Toni - posted on 08/28/2009

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Hi Tammy; Yes there is a Celiac Sprue Test...Ask you Doctor if he can't tell you the name just contact me here and I will get it for you from my Doctor, my family has all been diagnosed with this test. After my daughter had a neg biopsy done...She had lost almost 20 lbs in a month she is under 5 ft 100 lbs to begin with she could not afford to lose the weight. after much fighting with doctors who would just write me off, Mothers know their kids....I credit the lab and our family Doctor we work with they did the blood test that found Celiac Sprue....We then were able to find that I also had it, I did not suffer from IBS but Celiac....Celiac is a Immune disorder. I would look into it further...

Amanda - posted on 07/25/2009

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My 17 month old daughter was just diagnosed with Celiac and what you describe is exactly the problems we had. It took us 5 doctors, 2 ERs, and a 5 day hospital stay to get the answers we needed. Not to mention an appt with a GI specialist for Sept. 24th which was obviously not soon enough. We just got home from the hospital yesterday and she was admitted on Monday. They suspected Celiac and told us to start a gluten free diet on Tues or Wed (all the days mixed together in that place) even before the blood test results were back and she's already shown a world of difference in the past 3 days. Her gas build up has already started to break up and relese (which is probably one of the most unpleasant parts of recovery *pinches nose*) and she hasn't thrown up once. For 2 months she had chronic vomitting, moderate weight loss, immensly bloated belly and on again, off again diarrhea. Now of course it is going to take a while for all of the gluten to pass through her system and for her health to return to 100% but a difference in 3 days is a big deal. My advice would be to take it upon yourself to put her on a gluten free diet and see how she does. Then you can teel the doctor the reaction and maybe they will listen.

Rebecca - posted on 06/06/2009

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Those sound like classic Celiac symptoms to me... Testing in children under 3 often causes a false negative. Their immune and digestive systems are not fully developed yet. If I were you, I would pull the gluten AND the sugars for a while - 2-3 weeks and then do a trial. The only thing more definitive than the biopsy is to try the diet.

My kids don't have sugar intolerance, but my oldest has type 1 diabetes and my middle one is IgA deficient, and lactose intolerant.

Good luck!

Lisa - posted on 04/16/2009

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As far a I can tell there is only one definate test for gluten intolerance ... long term trail and error.  My husband has been tested every way you can think of and all of it comes back negative, however here is a definate difference in his health and attitude whenever I can get him to stay off wheat.  As far as all the Gi symptoms she is having they sound far more like gluten intolerance, then sugar intolerance.  Also, you have to remember that when someone is gluten intolerant there body is unable to process a ton of different things so it shows up as a whole slew of alleregies when in fact there only a few.  but they have to be truely off any form of gluten for a few weeks to see any difference.

User - posted on 04/02/2009

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Hi Tammy,



Boy, your story reads just like the first two years of my sons life!



We have learned through a process of elimination and giving up on SEVERAL MD's including GI specialists, allergists and regular pediatricians and gone to Naturopathic medicine.



We have eliminated most of my son's problems by eliminating gluten, dairy, eggs, sugar and corn syrup.  I try to stay away from soy as it is very gassy and causes bloating and corn which is extremely difficult to digest. (see the movie 'King Corn')



For sugar replacement we use raw Agave syrup in place of almost everything including over our pancakes and Yakon syrup which has natural probiotic qualities in place of deeper, darker sweet flavor such as molasses or brown sugar.



Have you seen a Naturopathic Dr. yet?  Have you tried probiotics?  Has your child been on many antibiotics and could there possibly be any other food allergy/intolerance issues?  In my family pineapple is a common cause of problems with digestion and behavior.  Funny things can be triggers.  I think when children are little tests can be inconclusive.    To my knowledge there can be many irritants and if a body is having issues of auto-immune responses then going back to basics is the best way to find out if there is something that may have been missed.



Please seek all the help you can.  Reflux can be masked by medications but what is the cause? 



I urge you to persue alternative medical oppinions just to see if there may have been something missed.   My son was so sick we got to know the emergency room people by first names.  Since seeking Naturopathic help we now know much more than 5 different pediatricians and 3 GI specialists could tell us.



www.lifeisgoodglutenfree.blogspot.com

Nancy - posted on 01/25/2009

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Hi Tammy,



   I have personally don't know anything about a sugar intolerance.  I do know that if a person is IgA deficient, the blood test results may be inaccurate.  Was your daughter eating gluten when the biopsy was done?  Also, the biopsy can be false negative depending on where the samples were taken from.  I think I would have to pursue the Celiac diagnosis a little more.  It's not something you want to find out later when it's already had an impact on her health.

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