Gluten Free, But Tummy Hurts And Has Itchy Legs

[peppyking]

My daughter was diagnosed with celiac about 6 weeks ago and has been gluten free since. I have been neurotic about cross contamination, and we are all now gluten free in our home. It obviously has not been long, but she is still complaining of her tummy hurting (mild and not interfering with play, which was the same as her primary symptom prior to diagnosis) and now she has constantly itchy legs, no rash.  What could that be? Should I consider lactose or take her to an allergist? Should I wait it out, and see if it improves as her small intestine heals.

[Dugudugu]

It took me 6 months to get noticable improvements of the symptoms. I'd say give it more time.

[cyclinglady]

Have you read our Newbie 101 thread on coping? Here is a direct link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

I am sorry that your daughter is not feeling well. She will improve but it takes time. For a younger person, perhaps a few months, but it has taken me almost two years to feel well and I am old.

I would eliminate all dairy for now. Damaged intestinal villi can not release the enzymes to digest lactose (milk sugar). Many of us have food intolerances as a result of celiac disease and improve with healing.

Remember, she is malnourished. Feed her gluten-free whole foods and add plenty of good fats. This should improve her skin and nerves. I had itchy skin on my rems but no rash and that resolved.

A gluten-free house? That is wonderful support. Remember, all first degree relatives should get tested too! Some of our members were diagnosed simply because they had a family member who had a celiac disease diagnosis and they were symptom free!

[nvsmom]

I too would eliminate dairy.  Intestinal damage  can cause lactose intolerance so once she is healing, 6-12 months from now, you can reintroduce it then.  

 

I too had an issue with dairy and I found the pain similar to that caused by gluten.  I can now have some sources of dairy but I still keep it to a minimum.

 

Best wishes.

[peppyking]

She does not like milk, so that's easy. We do leafy greens, but she loves yogurt & cheese. Should she be okay with hard cheeses or just stay off everything for 6-12 months? Are lactose free yogurts a good idea? What about baked goods with milk in them? Is it worth a trip to an allergist to see if it is a lactose problem? I just feel like I'm flying blind. The pediatrician seems to not know much about celiac, and the GI says to see how she is in 3 months.

 

Thank you for the tips. My husband (very symptomatic) and son tested negative, although my husband is going gluten free now anyway due to his symptoms. I just got around to my test last week, so we'll see... although, I have no symptoms. With her being only three, it seemed wise for everyone to be gluten free at home. I have checked out the newbie page and it (along with scouring the forum for information) has been so helpful.

[africanqueen99]

Did she have stomachaches pre-DX?  My oldest's main symptom was stomach pain (had been going on for well over a year before DX.  Anyway, once we went gluten-free it went away, but it took her the healing time before they were gone for good - I'd say 4-5 months. 

[nvsmom]

She does not like milk, so that's easy. We do leafy greens, but she loves yogurt & cheese. Should she be okay with hard cheeses or just stay off everything for 6-12 months? Are lactose free yogurts a good idea? What about baked goods with milk in them? Is it worth a trip to an allergist to see if it is a lactose problem? I just feel like I'm flying blind. The pediatrician seems to not know much about celiac, and the GI says to see how she is in 3 months.

 

Thank you for the tips. My husband (very symptomatic) and son tested negative, although my husband is going gluten free now anyway due to his symptoms. I just got around to my test last week, so we'll see... although, I have no symptoms. With her being only three, it seemed wise for everyone to be gluten free at home. I have checked out the newbie page and it (along with scouring the forum for information) has been so helpful.

 

Lactose is the sugar found in milks. Hard cheeses will often be lactose free, or very low in lactose, so they are often not a problem. I chose to go forgo cheese for 6 months just to give my body a chance to heal without any added stress.  I did occasionally have a small bit of cheese along with a lactase pill, and I was fine.

 

Yogurt, on the other hand, will probably have milk sugars in it unless you find something lactose free. You could also try coconut, almond, rice or soy yogurts. They are pretty good but the texture is quite different. 

 

A lactose intolerance is an individual thing - some are fine with small amounts of dairy and others need to abstain entirely. Taking lactase pills along with the dairy can help somewhat with digestion. Those who are lactose intolerant do not make enough lactase to digest the milk sugar, lactose, often because the villi that make it are too damaged.  Lactose intolerance is not an allergy.

 

Some celiacs will not show much for improvements at 3 months gluten-free, beyond improved tummy aches.  If he retests her, don't be surprised if her results are still positive at that point, antibodies can stay elevated for quite some time.

 

Good luck with testing the rest of the family.  Remember to retest every 2 years or so if anyone is eating gluten because the disease can show up at any time.  

 

Hope your husband feels better gluten-free too.

 

Best wishes.

[greenbeanie]

Did your daughter start taking any new vitamins or probiotics around the time or her diagnosis? This was probably just a weird fluke in our case, but the nutritionist at my daughter's GI office recommended a chewable calcium supplement because she couldn't handle much dairy when she was diagnosed, and we were worried about her calcium intake. The supplement was dairy free and gluten free, but it still gave her stomachaches (even when taken with a full meal). At first I assumed the stomachaches were just a continuation of the gluten ones because she hadn't fully healed yet, but they were actually "different" tummy aches from the vitamin instead. She was too young to really describe the pain in detail, so it took a while to figure out. We removed the vitamins and the tummy aches stopped right away, and we did one test a week later and her tummy hurt again within an hour. Fortunately, this had an easy solution! Now we use a lower-dose gummy calcium vitamin, which she tolerates much better.

I don't know about the itchy legs thing, but consider whether any new foods or supplements she started after going gluten free could be a problem. In my own case (as an adult), I started having much more serious reactions to sulfites because my intake suddenly increased due to all the bleached starches in gluten-free flours plus the fermentation in probiotics. It caused classic allergy symptoms for me, including itchy throat and swollen tongue. Many wheat flours are bleached with sulfites too, but I rarely ate breads before, so it was only once I started baking yummy gluten free things that the bleached-flours problem really became apparent. Anyhow, the point is that some other food that your daughter started eating (or eating more of) recently might indicate a totally unrelated problem that just happened to manifest now because her diet changed. Or, of course, it might just be because she's still healing...but if the itchy legs in particular are new, that suggest something else may be going on too.

Good luck!

[peppyking]

Did she have stomachaches pre-DX?  My oldest's main symptom was stomach pain (had been going on for well over a year before DX.  Anyway, once we went gluten-free it went away, but it took her the healing time before they were gone for good - I'd say 4-5 months. 

Yes, that was her main symptom, too. That's where I wonder if it's just going to be that way until she heals or if it's lactose or something else. For months she told me her tummy hurt, but I figured she was just gassy or misread bowel signals. I feel so terrible for not doing anything sooner, and I don't want to make the same mistake again:(

[peppyking]

Did your daughter start taking any new vitamins or probiotics around the time or her diagnosis? This was probably just a weird fluke in our case, but the nutritionist at my daughter's GI office recommended a chewable calcium supplement because she couldn't handle much dairy when she was diagnosed, and we were worried about her calcium intake. The supplement was dairy free and gluten free, but it still gave her stomachaches (even when taken with a full meal). At first I assumed the stomachaches were just a continuation of the gluten ones because she hadn't fully healed yet, but they were actually "different" tummy aches from the vitamin instead. She was too young to really describe the pain in detail, so it took a while to figure out. We removed the vitamins and the tummy aches stopped right away, and we did one test a week later and her tummy hurt again within an hour. Fortunately, this had an easy solution! Now we use a lower-dose gummy calcium vitamin, which she tolerates much better.

I don't know about the itchy legs thing, but consider whether any new foods or supplements she started after going gluten free could be a problem. In my own case (as an adult), I started having much more serious reactions to sulfites because my intake suddenly increased due to all the bleached starches in gluten-free flours plus the fermentation in probiotics. It caused classic allergy symptoms for me, including itchy throat and swollen tongue. Many wheat flours are bleached with sulfites too, but I rarely ate breads before, so it was only once I started baking yummy gluten free things that the bleached-flours problem really became apparent. Anyhow, the point is that some other food that your daughter started eating (or eating more of) recently might indicate a totally unrelated problem that just happened to manifest now because her diet changed. Or, of course, it might just be because she's still healing...but if the itchy legs in particular are new, that suggest something else may be going on too.

Good luck!

That's a good point about being something new. We are doing gluten free breads and crackers... cookies for occasional treats. I can check ingredients on those. If it's sulfites, would that possibly show up on an allergy test?

 

GI said not to do probiotics. It surprised me, but I was in too much of a daze to ask why not. I was also happy she was doing so much better.

 

I feel like so much has changed with her since diagnosis, though. She had a voracious appetite and healthy weight with chronic mild tummy aches, and one really bad one, which the GI suspects was a serendipitous virus that got me to take her in. The positive celiac blood panel was a complete surprise. The ped referred me to a GI and said to take her off gluten:( She was off a week when the GI said put her back on for biopsy. The week she was back on gluten was horrible: constant debilitating tummy ache, vomiting, crying, lethargy.... all from a previously "seemingly" healthy little girl. Her body had an extreme reaction. Since then, she has not been the same. She is a picky eater. Her behavior, while always strong willed and dramatic, has been more so. She is clingier to me. She is constantly itchy and the tummy aches (back to mild) are more frequent. It's the stuff that bothers her that is hard to deal with. It's hard to know what might be from new things added or from that week of glutening.

[gilligan]

Does she take vitamins?  I found out the hard way that my chewable vitamin was made with gluten.  

[Luv-my-kidz]

I'm really glad you posted this! I have a five year old that was diagnosed with celiac disease 2 months ago and we did the same going gluten free in the house and I don't see much improvement. My daughter hasn't stopped complaining about pain since we started the diet, and she started throwing up again too. I feel horrible that she's still hurting and wonder if she's still getting gluten in something that I'm missing. I tried switching paper products and bathing products too.

I know exactly what your going through wondering if I just need to wait and I'm just expecting too much too fast. I keep thinking maybe the Dr's are missing something.

I hope your daughter feels better soon!!

[nvsmom]

I'm really glad you posted this! I have a five year old that was diagnosed with celiac disease 2 months ago and we did the same going gluten free in the house and I don't see much improvement. My daughter hasn't stopped complaining about pain since we started the diet, and she started throwing up again too. I feel horrible that she's still hurting and wonder if she's still getting gluten in something that I'm missing. I tried switching paper products and bathing products too.

I know exactly what your going through wondering if I just need to wait and I'm just expecting too much too fast. I keep thinking maybe the Dr's are missing something.

I hope your daughter feels better soon!!

I think it is best to move ahead assuming that she does need more time (pain can take months to resolve) but keep looking for other answers while double checking that her diet (and toothpaste, soaps, lotions, vitamins) is all gluten-free.

 

I hope your daughter feels better soon.

[peppyking]

Your's, too! I am thinking it is most likely just the healing process. I hadn't realized she was itching before, but I the other day I watched a video of her from July and she was scratching, and then I recalled a few before-diagnosis itching episodes... It just got much worse after. I just want to give her an anti itch pill, but nothing helps.