How Much Weight Loss And Anemia In Children Prediagnosis?

[simplemom]

My 7.5 year old may not have celiac. His test was negative, but I didn't know my son was supposed to eat the normal US diet amount of weight daily for an accurate test and the doctor didn't know to question me about our home diet, he thought we ate typical American food, but I fix a lot of wheat free meals because of my husband's wheat allergy. My son ate wheat a few times/ week, so I didn't think that would matter for the test. Now that I found out about needing to have more gluten intake for a positive antibody test and emailed the doctor about our unintentional wheat limitation in our son's diet, the MD is going to do a celiac panel next month after my son eats a "regular" wheat containing diet.

My son's weight was 41 pounds over a year ago, went down to 39 pounds after a winter of asthma flares (got tested for Cystic fibrosis back then, was negative), then after 2 months on an antihistamine that helped increase appetite as a side effect, gained weight again up to 43 pounds. That was May. Now he weighs 41.6 pounds on the same scale, was 41.4 pounds 3 weeks prior when he was being treated for walking pneumonia. His thyroid labs, stool samples, and sed rate all look great. His hemoglobin is good, but his hematocrit was around 33, a little low. He eats a great healthy whole foods diet full of lots of high iron foods from meats, nuts, green leafy veggies, and much more. He doesn't drink milk and drinks water or whole fruit smoothies instead which would help iron absorption. Md started him on iron supplements and will recheck hematocrit next month, along with the celiac panel I was naive about when the 1st test was done.

MD and hubby don't really think my son has celiac, thinking the MD is just ruling it out to cover all his bases. But I am suspicious. However, eating a regular wheat diet for 2 weeks now, my son doesn't seem sick at all, just hyper from all the sugar in the wheat I suppose. I would think if he had celiac, he would start to have GI issues after eating larger amount of wheat (about 2 servings/day of whole wheat). I also would think his weight wouldn't go up and down, I would guess he would loose weight and continue to loose. I can't explain the slight anemia unless it is true that some kids without malabsorption problems can eat a great diet and still have slight anemia. Son's height growth seems normal over the past couple of years.

Was weight loss or anemia in any of your children more subtle or was it drastic? I asked a similar question on the prediagnosis board, but got no replies to the specific question about weight loss and anemia. I would think these symptoms would vary in children vs. adults.

[nvsmom]

My kids do not had a celiac disease diagnosis but two of them have definite issues with gluten. They all had a bit of a growth spurt after going gluten-free but my oldest, who I worry over because he is falling off the growth curve, has not really caught up to his potential. He is 11 and his 9 year old brother is taller. He had no weight loss or anemia either

[blmoreschi]

My 11 year old lost 5 pounds in a month when she was healthy - not even a cold. And no noticeable change in appetite. That was Dec 2012, and she was diagnosed with Celiac in April 2013. I had 3 different doctors tell me the weight loss was no big deal, and they all had to do some major backtracking when it turned out she had Celiac. She didn't have any GI issues, but has osteoporosis, and certainly weight loss and osteoporosis are two major Celiac factors - but instead I was told to stop worrying so much. And it took a visit to a different doctor/hospital for someone to suggest Celiac.

 

If I were you, I wouldn't worry too much about a pound or two when your son is ill with something else - my daughter does that all the time. It's the unexplained weight loss that worried me.

[kb27]

My son was 8.5 when diagnosed.  He was small (maybe 50 pounds), but not overly so.  And he was anemic, but borderline so.  It was the iron deficiency that caught our doctor's eye - on a blood test run for something else.  And his iron levels didn't improve with supplements.  That was what prompted the celiac test.  He never had GI problems.  

 

After going gluten-free, I think he gained 10 pounds and grew 4 inches in the next six months.  It was amazing.  He's been gluten-free for 2 years now, and has been shooting up in the growth charts.  

 

So I guess to answer your question, my son didn't really lose weight before going gluten-free, but his weight gain was really slow (almost stagnant for awhile).  And his iron levels weren't extremely low, they were just below threshold.  It was enough for one pediatrician to notice and another not to.  I'm glad ped #1 followed up.  What prompted the celiac test was that iron supplements didn't seem to do anything to improve his levels.  

[simplemom]

Great insights parents. I think we have a wonderful pediatrician, the only thing he faulted on was not asking how much gluten my son ate before running the 1st celiac test. The MD mentioned when he called the first result in that the celiac test was negative (at the time I didn't know a single antibody test was the basic screening), but when my friend encouraged me to tell the MD about our less than normal wheat intake in the home, the nurse said the MD was going to do the entire celiac panel when the hematocrit for iron level is retaken next month. If the whole panel is negative, I will feel more secure about celiac not being the issue vs. if only the single basic antibody test I read about was ordered. My GI nurse practioner friend did say her cover doctor is seeing more gluten related illnesses, rather celiac or sensitivities, so if our son's test is negative we might do a gluten-free trial for a few months just to see if ds gains weight or has less sinusitis or asthma flare ups. She said we should know within a few weeks if gluten sensitivity was an issue or not.

I have consoled my worrying in knowing that in the less than a month I will know if the iron supplements are improving his hematocrit, and I will know for sure if celiac can be marked off the list as a possibility. Also, it is highly possible my son is just slow to gain weight but it's no problem. It sure would be nice to just see the MD for an annual well visit where nothing shows up as a concern, or for my son to have a virus that doesn't turn into something like pneumonia or synovitis though! My daughter rarely has a sick visit to the doctor, and she bounces back to normal after a virus quickly. She's 2 years younger than my son, and people have often asked if the two kids were twins! I am thankful this website forum exists for support, questions, and advice. If my son's antibodies are positive, it is great to know I already have a good friend, family, online, and community support system in place to help my son get healthier.

[simplemom]

P. S. to kb27, I would LOVE it if my son makes it to 50 pounds by the time he is 8.5!

[simplemom]

Update...my son went in for a one month followup MD visit today to recheck his weight and redraw his lab work. He has been eating gluten everyday. He gained a pound and his hematocrit went up to normal after taking iron supplements for a month. The doctor still wanted to repeat his celiac panel just to be sure we're not missing something with his past issues, but the MD is expecting the repeat panel to be negative.

I too suspect the celiac panel to be negative, but will say I am a firm believer in gluten or wheat sensitivity, as my son has been so hyper eating wheat more than once/day. I am looking forward to limiting his wheat intake after we get the result. Also, my husband has a confirmed wheat allergy, but still eats wheat because his symptoms are sinus related and he only has problems if he eats too much. My husband is more on board with my going back to cooking wheat free meals for him now that he has watched his son react to too much of it.

[cyclinglady]

I was anemic. I have thalassemmia (a genetic anemia) and I had iron deficiency anemia. When I took iron, my ferritin levels improved as did my hemoglobin. Once I stopped the iron supplements, my ferritin levels would drop, then my hemoglobin would drop and I would be very anemic again. I was able to absorb some iron, but not enough for me to stop taking iron supplements. That was the one clue my GI latched on to diagnosis me. My blood panel was mildly positive but I had moderate to severe intestinal damage. I did not suffer from intestinal problems when I consumed gluten.

Just food for thought.

[simplemom]

Thank you cycling lady. While relieved that my son's MD appointment was so much more encouraging than the one before that, I am still going to keep my son on an average SAD amount of gluten till the MD calls with the celiac results. If by chance the panel results are positive for antibodies, I want my son to get a biopsy ASAP instead of having to wait to do another gluten challenge. I have to admit, I am curious why he had the anemia in the first place since he wasn't anemic a couple of years ago when he got a lot of blood work to rule out rheumatoid arthritis. His diet is a very iron rich one without supplements, plus he doesn't drink milk or caffeine that would interfere with its absorption. Your sharing the above information with me helps me to know I need to stay on top of any symptoms that develop and have his blood work for anemia repeated sometime after the supplements are stopped.

Edited: cycling lady....I hope your food for thought is glutenfree

[cyclinglady]

Thank you cycling lady. While relieved that my son's MD appointment was so much more encouraging than the one before that, I am still going to keep my son on an average SAD amount of gluten till the MD calls with the celiac results. If by chance the panel results are positive for antibodies, I want my son to get a biopsy ASAP instead of having to wait to do another gluten challenge. I have to admit, I am curious why he had the anemia in the first place since he wasn't anemic a couple of years ago when he got a lot of blood work to rule out rheumatoid arthritis. His diet is a very iron rich one without supplements, plus he doesn't drink milk or caffeine that would interfere with its absorption. Your sharing the above information with me helps me to know I need to stay on top of any symptoms that develop and have his blood work for anemia repeated sometime after the supplements are stopped.

Edited: cycling lady....I hope your food for thought is glutenfree

Ha! Of course it is!