Leg pains that come and go all night

[Attanett]

Hello,

Our daughter was diagnosed with celiac disease in November 2021 when she was just turning 2 years old, and has been on a gluten free diet since. She had also been only using lactose free milk products, but we introduced lactose in October 22. We have now stopped it again, since the last two weeks.
Her only symptom, which started in June 2021, was leg pains. She would mostly get them in the evening and night, but sometimes during the day. Always one side, but it could be either side each time and calf, shins, foot, thighs. Sometimes she has pain in her hands. She had very high levels on her celiac blood tests so we are certain she has celiac disease. Since going on the diet her results are very low, they went down to close to 0 by April 2022. We are very strict, and I feel very certain she is not getting any gluten at home, and quite confident that the kindergarden also are keeping her safe. We talk about her celiac disease with them very often, and I ask about what they are feeding her etc. They are mostly all gluten and lactose free now, for all the kids.

Since starting her diet it has been a lot of up and downs symptom wise, and that’s why I’m turning to this forum. We initially saw some improvement, and had fewer bad nights for a while. In early 2022 she had between 3-7 episodes of pain a month, but after summer it’s been more. In November, December and January she has more than every other night on average, about 15 episodes a month. Often several days in a row.

It’s absolutely heartbreaking to watch her have so much pain. She’s only 3, and she now asks for medicine when she has pain as she wants it to go away. If we don’t give her medicine, she will keep waking up about once every hour through the night. We have to go in and massage her and wait while she cries a LOT. It usually lasts about 10-20m, but then comes back about an hour later.

She has had blood tests that show almost no issues, anything from blood, vitamin, minerals to a lot of different genetic disorders and rheumatoid or inflammation disorders. Everything coming back negative. She’s had X-ray of her legs and arms. She has very slightly high magnesium and calcium, but just above her range. Also very slightly high fritt t4 and t3, normal tsh. She eats fruits and vegetables, meat, lactose free dairy, fish supplements (omega 3/6, vit a).

She is VERY active and agile, tall and thin, never had a problem with being tired or seeming affected by celiac disease other than these pains.

Anyways, our doctors have now given up. Initially they said it’s not growing pains, she was too young (1,5 y/o), it didn’t quite fit as she also got it during the day etc. Now they say it just be growing pains, nothing more they can do. But she seems to be getting worse, and it’s breaking our hearts and making me go a bit nuts trying to google and figure things out myself.

So, I guess my question is regarding this pain, if it sounds like celiac disease pain. I read that many celiacs have leg pains. Is this how it feels, like it it painful for a while 10-20m, goes away, then comes back and hour later, repeat repeat repeat all night? Does this sound familiar?

Does the pain come with gluten accidents? If so, is it the same day? Several days? Or always deficiencies? She seems to have no deficiencies, all results are normal, and they have checked a LOT.

Also… any suggestions? Stretching before sleep seems to make it worse. Only thing that helps a bit is massaging, but she still cries through this. It’s a real pain, it wakes her over and over and her face looks like she’s in proper pain, proper tears.

 

 

[Scott Adams]

Welcome to the forum.

If you are sure about her diet being 100% gluten-free, then I wonder if she has some vitamin/mineral deficiencies? Have you noticed if her eating a banana helps at all? Sometimes potassium a deficiency can cause muscle cramping, and low magnesium as well. You may want to haver her vitamin/mineral levels checked, which, unfortunately would involve a blood test. It's possible she might need to take supplements for this if low levels are found.

Does she eat gluten-free oats? If so, try stopping them for a while, as around 9% of celiacs cannot tolerate oats.

[cristiana]

Hello there,

I am so sorry for your daughter, and for you all, it is heartbreaking to see one's children in pain.

I would certainly look at dropping gluten-free oats (as well, obviously, as regular ones) for at  least 6 months to see if that makes a difference.  That is the advice coeliacs are given in the UK when first diagnosed.  

I think keeping a daily food diary, too, would be a good thing, just in case a pattern emerges.

Also, don't eat out at all or at other people's homes.  If this is gluten related,  food can be so easily become cross-contaminated in restaurants or by well-meaning friends/family.  I have lost count the amount of times this has happened to me.

Another thought is that if the rest of you are eating gluten, make sure that a dishwasher is doing a thorough clean and not leaving residues (I had this problem, and it was causing issues) and that you are using separate toasters, clean grills etc.

I did have a lot of musculoskeletal pain when I was first diagnosed and for a few years afterwards, but it did eventually settle.   One thing that helped in that time were warm baths (not hot) with Epsom salts for about a 20 minutes soak.  You might wish to try something along those lines - supervised, of course, because her age aside, this can make you so relaxed you can feel sleepy or a bit wobbly afterwards.  (I've googled whether children can have Epsom salts in their baths, a lot of websites say yes, but I'd check this first with the pharmacy.)

One last thought - has your daughter been looked at by a physio or chiropractor to see if they can see any other explanation for this pain?  The pain I was feeling in my upper legs and pelvis was actually pain referring from my sacroiliac joints.

Cristiana

 

 

 

 

 

[knitty kitty]

@Attanett,

Thiamine Vitamin B 1 deficiency will cause leg cramps and neuropathy in the hands and feet.  Thiamine deficiency symptoms can worsen in the summer, especially if active outdoors.

I experienced severe leg cramps and tingly hands at night and in the daytime when I was Thiamine deficient.  

Thiamine is NOT one of the vitamins routinely checked.  A special test, erythrocyte transketolase, is used to measure how well the body is utilizing Thiamine.  One can have "normal" blood levels, but still have a thiamine deficiency because the body is not utilizing Thiamine properly inside cells.  

http://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

Has your daughter been tested for Ehrlers-Danlos Syndrome?  Many people with EDS also have Celiac Disease.  Muscle cramping and hypermobility can be symptoms.  

Hope this helps!  Keep us posted on your progress!

[cristiana]

I also wondered if perhaps she could be experiencing restless legs?  I think children can be affected.  I have something similar periodically, in my case I have wondered if it is to do with some sort of deficiency.   As @knitty kitty says, not all deficiencies are tested for - more's the pity. 

[knitty kitty]

@cristiana,

Restless leg syndrome doesn't really involve cramping.  It has been linked to B12, iron and thiamine deficiencies.  

Cramping is a symptom of thiamine and magnesium deficiencies.  Thiamine and magnesium need each other to function properly.

 

[cristiana]

Hi there, @knitty kitty.  Yes, I totally agree with you.   Sorry, I expressed myself badly -  what I ought to have written was that I was wondering if the sometimes severe sensations that RLS can bring about might be expressed verbally as pain by a three year, whereas an older person would say it was an unpleasant creeping/crawling feeling.  It was the fact that it was affecting her at night-time that made me wonder. 

 

[knitty kitty]

@cristiana,

Yes, definitely.  Communicating the sensations and using proper terminology can be a problem for little kids. And even adults.  

I used to get diabetic neuropathy if my blood glucose levels were too high.  It was so bad it kept me awake.  There's vitamin deficiency neuropathy, too.  

https://pubmed.ncbi.nlm.nih.gov/11301568/

[EllenW]

You call this pain and not cramps. It may be a communication breakdown with a three year old but one thing that occurs to me is that my husband, an adult-diagnosed Celiac had severe leg pains at night too and he was finally helped by going to a vascular surgeon to assess the situation with the valves in his calves. He now wears compression sleeves on his legs and the pain has all but disappeared. I wonder if this could help your daughter. (Yeah, who knew we have valves in our calves....?) 

[MiriamW]

If all of the above has been ruled out and you are 100% certain that there is no possibility of gluten cross contamination, you might wish to try eliminating dairy products too for a few months to see if it would help. Many coeliacs can't tolerate proteins in dairy products rather than lactose.