Celiac? Please Read And Help Me

[Daisyaday]

Hi,

I need help.

I have a 12 year old daughter, she is a little thing and not yet hit puberty. She has been having for at least 3 weeks severe pain. I am giving the normal painkillers and they are not helping.

I have been to the drs and blood tests were taken, they were for a few different things, not celiac though, and everything came back in the normal range except for low iron and high allergy markers.

What started out as pains in the arches of her feet, ankles sometimes and then to the thumb joint on both hands so that she cannot write or play cello anymore without pain to pain all through her body. I often have to strap her limbs or even her back with bandages to help ease the pain. The pain is severe, she has had such bad headaches and pains that the pain killers I am giving her are not helping. DD has even taken a painkiller with codeine in it but no relief was evident. She has been getting pains everywhere and sometimes I am able to rub them and they go away in a few minutes only to appear elsewhere. She has had stomach pain that doubles her over and all the really helps is heat packs and a firm weight from the heat pack.

DD has also complained about how part of her brain feels asleep or foggy. She ended up at the hospital yesterday (Thursday)as the pain was so awful and they saw it go from just pain to severe pain in her hip and then see her doubled over in pain from her stomach. At this point we were sent home and we have another appt with them on Monday.

Night seems to be an awful time for her, she has a terribly hard time sleeping because she is in so much pain.

In hindsight, we realise that she'd been complaining about her arches and her ankles for sometime, one day a few months ago, she

said to me "I am always in pain, if you knew how much pain I am in, you'd be amazed, but I don't usually say anything."

When she was very young, about 3 or so, she'd get terrible pains in her stomach. She would cry and complain and even wake at night crying. They eventually just stopped, then about 3 years ago she spent the whole night crying with really bad pains in her stomach. The next morning with her still complaning, I took her to the drs who suspected possible appendicitis we were sent to the hospital where the dr (?) suggested when he could find nothing wrong and when the pain just started to ease, that the bike riding she did the day before had caused it. Sigh.

I had her allergy skin tested a year or two before that and she tested reactive to just about everything - except wheat and dairy. She even tested positive to rice and potatoes. DD's allergies from the skin prick tests were so many that it was impossible to feed her, she has a restricted diet because she is super fussy and then when she could only eat certain things it was ridiculously hard to do, so we went back to her normal diet. We sometimes think she gets dark circles under her eyes from eating too much corn, we cut back and the circles eventually fade.

No-one in our families has celiac that we are aware of. However, my mother has pernicious anaemia where she cannot make her own B12 and needs to have injections every 3 months. She has been anaemic most of her life, whether it is because of her B12 issues I don't know. Mum also has low Vitamin D levels despite swallowing large amounts and her calcium levels are not high either. It was suggested to her by a nurse she knows, that she possibly has celiac disease, but she has never been tested and doesn't show signs of it.

I ended up at this website because when I typed in dd's symptoms, random body pains that go from tolerable to severe, headache, low iron, high allergy and foggy brain, the links to celiac popped up. Everything seems normal in the bathroom department, she never mentions any issues. DD eats a lot of bread, she eats a fair bit of wheat because that is about all she does eat. The funny thing with the sore stomach is that it appears to be her actual stomach that is hurting and not her intestines and when the pain stops, she is incredibly hungry. I wonder if she is getting the message to eat so intensely because it in some ways soothes her stomach.

I have no idea if what is wrong with my daughter is celiac or not. I guess I am wondering because it came up on google, she has body pains and the high allergy test and low iron.

If you have any thoughts that it may or may not be celiac please let me know. Thank you for your time.

[1desperateladysaved]

I hope that you can find out how to help your daughter. Diet is a very good place to look, I think.

Have you tried a rotational diet for the allergies? You eat one family of foods one day and another the next, so as not to repeat foods for 4 days. I am sure you can find instructions online.

I have experienced foot pain. Mine was plantar fas$#&is. This was helped by applying cold for 20 minutes at a time. I also had pain in my legs which started in the feet one time, and it crept up higher and higher up my legs over months. It changed when I got on appropriate supplements and cut out dairy.

DT.

[MitziG]

Your daughter sounds very much like a celiac. Both my kids and I have it and have very different symptoms. My son was like your daughter- constant bone and joint pain and stomach pain, not intestinal. Ravenously hungry. Celiac can cause other food sensitivties to develop, but since it is not an actualy allergy, it would not show up in a wheat allergy test. I would get a full celiac panel done on her pronto, then regardless of the results (false negatives are common) puut her on a gluten-free diet. I bet her issues will resolve, along with her other food sensitivities.

[kb27]

I have been to the drs and blood tests were taken, they were for a few different things, not celiac though, and everything came back in the normal range except for low iron and high allergy markers.

My son was diagnosed 6 months ago and his ONLY symptom was low iron. No intestinal problems, no joint pain, nothing.

I would definitely have your doctor run a celiac panel. Joint pain is a common symptom, too.

[eatmeat4good]

My son had leg aches and pains all the time as a child. At the time, I said, "It's just growing pains." Just like my mom said to me....Dr. said it wasn't serious....

Years later he tested with low iron....Dr. said it wasn't serious....

He suffered from 7 to 16 and when we trialed gluten free.

His leg pain and depression are gone and my "fibromyalgia" is gone.

We are Celiac.

It would be wise to ask for Celiac testing and if it is refused or negative, do a gluten free trial to determine for yourself if gluten is causing the problem.

It certainly sounds like her symptoms are consistent with Celiac.

I hope you will be able to get the testing, but if you can't, you are now aware of Celiac and you can eliminate gluten if you choose to.

As for the stomach pain being actual stomach pain.... The duodenum is the area just past the stomach and that is the part where Celiac damage occurs, so it would make sense that she perceives the pain in her "actual stomach" as it is just past the stomach where gluten does it's harm.

I hope she gets some relief soon.

[lil'chefy]

My son was diagnosed 6 months ago and his ONLY symptom was low iron. No intestinal problems, no joint pain, nothing.

I would definitely have your doctor run a celiac panel. Joint pain is a common symptom, too.

the best thing is to try gluten-free diet. Some strains of celiac do never show up on a celiac panel or biopsy!

[Daisyaday]

Thank you so much for your replies.

I am grateful for everyone of them.

I was talking with dd last night and found out that since she's started being sick (all the pain) that her

bowel habits have changed and she's been a little constipated from what I can gather.

Dd has had about 3 days of being really good as far as pain goes. Is this normal? If she had celiac disease would she

have periods where the pain was worse and then it just stop again? Although it might just drop back to the level where

she can function just fine but still have the thumb joint issues and the ankle/feet pains.

Thank you for your help, please keep giving me your advice. We see the paed on Thursday, so I am hoping we get somewhere

then. Although when I spoke to her by phone and I mentioned I was googling and celiac came up, she didn't seem impressed.

I am over their "don't google medical information" attitudes, I am sure if they needed a mechanic or wall paper they'd google it.

Thank you so very much, your help and listening ear mean everything to me right now.

[eatmeat4good]

Thank you so much for your replies.

I am grateful for everyone of them.

I was talking with dd last night and found out that since she's started being sick (all the pain) that her

bowel habits have changed and she's been a little constipated from what I can gather.

Dd has had about 3 days of being really good as far as pain goes. Is this normal? If she had celiac disease would she

have periods where the pain was worse and then it just stop again? Although it might just drop back to the level where

she can function just fine but still have the thumb joint issues and the ankle/feet pains.

Thank you for your help, please keep giving me your advice. We see the paed on Thursday, so I am hoping we get somewhere

then. Although when I spoke to her by phone and I mentioned I was googling and celiac came up, she didn't seem impressed.

I am over their "don't google medical information" attitudes, I am sure if they needed a mechanic or wall paper they'd google it.

Thank you so very much, your help and listening ear mean everything to me right now.

You just keep educating yourself no matter what they say! I was sick and going to Dr.'s for 7 years until google gifted me with this place. I was too sick to google most of that time. But yes, it is normal to have periods of time where you feel almost normal, or at least not sick. That's why I always thought I was going to get better. The only diagnosis I got in those years was the "fibromyalgia" that really wasn't. They would scoff at me googling theories of my illness too and said don't believe everything you read. Well, if I didn't believe in google and celiac.com I would still be sitting on the couch somewhere wondering what in the hell happened to my life.

So you just keep trying to get your answers the best way you can. I live a perfectly normal life now and Dr.'s had nothing to do with it. Your child may seem normal at times and symptoms can range from constipation to diarrhea to normal BM's for a time...the consistent thing about Celiac or Gluten Intolerance is the illness keeps coming back. It is referred to as a chameleon disease for that reason...because it can manifest in so many different ways. Keep asking questions, observing symptoms and thinking for yourself mom.

[Daisyaday]

Thank you again.

Updates would be that over the weekend the pain reduced but was mostly at a place where she could live with it. She is on pain killers 4 hourly.

Ravenous hunger is still with her. On Saturday morning she had 2 eggs for breakfast and then about 2 hours later ate a

Bacon and egg mcmuffin and then slices of bread, all before lunch! Unheard of. DD would normally be content with her breakfast which might be bread or toast or cereal and then not eat until lunchtime or mornign tea, certainly not this hungry constantly thing that is

so new.

DD has also been experiencing dizziness, even when laying down or sitting. She comes over all hot when it happens and we have to peel layers off her. (It is winter here). This morning she has pains in her stomach but this time appear to be in her intestines/abdomen area, although it moves. Even with this pain she still wants to eat.

Last night she had a lot of trouble falling asleep with pain and dizziness, she woke up during the night with stomach pains too.

What do you think? Opinions desperately needed.

Thanks a lot.

[ciamarie]

Dizziness is another celiac symptom, some have found that B12 supplements are helpful with that. Though I agree with the others, having her tested for celiac if possible, then starting a strict gluten-free diet is probably the best idea.