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Will Drs/nurses Ever Really Understand?! + Muscle Pain Question

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I called the dr's office today to get my 11 yr old seen. Of course I had to talk to a nurse first and then she would tell me if it's necessary. My son has been telling me his muscles hurt and are sore quite often...very very frequently lately. He is always blaming the day before's activity. However, an 11 yr old who has been completely active all his life and never complained of muscles hurting after activities before must have something going on. He said it's been happening for about the last year. I've really noticed his complaints though in the last few months. My husband is undiagnosed gluten intolerant/celiac his Mother is also gluten intolerant/lactose intolerant. Our daughter is gluten intolerant for sure (blood test 7 yrs ago with high antigliadin IgA)...we didn't pursue further testing as doctor's told us she had a negative blood test for celiac) She knows now though at 18 that gluten bothers her...and stays away from ingesting too much. Anyway, my son also has some weird vision stuff going on since November. He has problems looking at things with pointy edges...it bothers his eyes to the point I have to cover edges of things in his room. Also, my other son was on the way to getting an endoscopy because of stomach pain he had for 3 months but it went away and for some reason we just decided to not do the testing.

Anyway, I talked to the nurse and explained his issues. She wasn't sure what it could be. Then I told her that his father was gluten intolerant/possible celiac and then she asked me if my son had diarrhea or stomach pain issues. When I said no she said "well, then it's not the gluten causing it." I wanted to hang up on her right then and there. Doesn't she know that gluten issues don't always start out in the gut. As a younger child though he did have more problems with constipation ...don't know if he has problems now though.

So, how can the medical community be so ignorant when it comes to the symptoms of gluten intolerance/celiac disease? That really boggles my mind.

Also, anyone here have problems like my son...with the muscles soreness? Oh, and he did tell me that while at summer camp earlier in the month his muscles hurt every day worse than before...and he even was cramping up a bit sometimes in his legs while running around doing games. The soreness is in his calves, thighs, arms and shoulders. Well, I put two and two together and realized that camp food is very high in gluten. Every meal he was ingesting gluten I am sure of it. Here at home he has been eating a lessened gluten lifestyle as my dinners are 100% gluten free...and often other meals are as well...but he still gets bread here and there a few times a week, macaroni and pizza probably every couple of weeks...and just other gluten foods because I don't eliminate it completely from the house. I noticed muscle pain was on the list of symptoms...and vertigo...so maybe there is something to this.

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i was having a lot of pain- severe muscle spasms... i couldnt wait to get home everyday from work- i would go straight to a BOILING hot bath to soothe the pain... id bring like 20oz freezing water to drink so i wouldnt dehydrate. everyday i did this- then i got up to taking muscle relaxers AND advil EVERYDAY.. finally got my vitamin D checked- and my level was below range. doctor didnt even tell me- but i always have them mail me my test results. i noticed my deficiency myself, and since i started heavily supplementing vitamin D3, i have only had a muscle relaxer like ONCE A MONTH.

get his D checked - it is SO COMMON to be D deficient with ANY autoimmune disease-> ESP> with gluten intolerance/celiac, and hypothyroid-> both lead to malabsorption- hence vitamin deficiencies.

1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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My muscle pain was chalked up to fibromyalgia, but now I think it's been a gluten reaction all along. Don't let them do that to your son. You're right to question them. Wish I had some advice. Docs/RNs never listened to me either.

glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.

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I can only personally attest to how painful my muscles (and tendons and ligaments) became starting at age 11. The doctors were completely puzzled about the situation, so I suffered for many years from the soreness and occasional bouts of tendinitis. In order to go to school, I had to get up early and soak in a very warm tub of water to relax my muscles, and sometimes I was in too much pain to go to school. Back then, my bones would also hurt, and I became night blind and extremely nearsighted. Also, at the same age (11), my teeth began to break, I became anemic, suffered from dizziness and fainting, and began to feel depressed. My muscle soreness lasted until I was 47 when I finally discovered that celiac was the cause of all my ills.

When you take your son in for testing, you might ask the doctor to have him tested for iron, B12, and D deficiencies as well as potassium and magnesium. Even if the tests for celiac come back negative, I hope you'll place him on a 100% gluten-free diet to see if his symptoms clear up. I wish that the doctors had discovered way back when I was 11 that celiac was the cause of everything. You're a good mom to put two and two together!

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Muscle pain and aching were a huge symptom for both me and my son. He was about 10 when his started. Mine started in childhood too. I was always told it was "growing pains." I wanted to know why no one had such sore legs all the time if it was just "growing pains." Seemed to me all my peers were gowing without growing pains. At 47 I found out about gluten here. All leg pain and muscle pain--gone. My son had leg pain and muscle problems off and on through childhood but no Dr. thought anything of it. Dr.'s said I baby him too much and needed to make him exercise. Oh my God. At 16 he went off of gluten because I did and many symptoms he had disappeared including, asthma, depression, muscle weakness and bone pain. I felt so guilty for not figuring it out sooner. But I took him to plenty of Dr.'s. Trust your instincts. You will be saving your son from years of misery with aching legs. I wish I had been as astute as you to have figured it out for my son. Good going Mom!!!!

Healing is a matter of time, but it is sometimes also a matter of opportunity.


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Thanks for all the replies. I am going to be persistent and demand some testing. Not that it might matter but I'm going to fill my son with gluten foods more than he gets now for the next couple weeks until his appointment.

My son deals with minor asthma too...which seems to be a little more prevalent in people with gluten problems.

Also, I took my other son to a new dentist who said he had Enamel Hypoplasia. She asked if he had trauma to his teeth when young or high fevers and no he didn't. Then she said well, it probably genetic then since I told her my other kids have those white spots on their teeth too. I remember reading about the incidence of enamel hypoplasia in kids with celiac. So just another thing that might be caused by gluten problems.

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Looks like my son has another symptom. The other day he developed a couple mouth sores. I have upped his gluten intake for the last week and a half because his dr appointment is next week. I thought maybe if they do blood work it'd be better that he had lots of gluten on a daily basis for a few weeks vs just a little gluten daily or none at all sometimes. His pains are present now every day even without lots of activity.

So we have:

muscle pain

enamel defects

constipation (which he said is worse this week...I'm sure because of the upped gluten intake)

mouth sores

weird eye symptoms (pointy objects feel as if they are moving towards him)

more anxiety



He is worried about a blood test. Doesn't want one. He said "mom, wouldn't all my symptoms be good enough to confirm that I have a gluten problem...why would I need a blood test." I feel bad...I don't want him to suffer but I also feel like it would be a good idea to get that blood test done....for his siblings and family's sake. Because if he is the one that tests positive...they'll all know for sure that gluten is their issue too. Making them more likely to comply to the diet. If they do blood work for celiac next week...that very next day I'll be implementing no gluten for sure.

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A blood test really need not be too traumatic - no worse than an injection and probably something he needs to get used to. Give him plenty of reassurance and advise the nurse he is a little apprehensive. Also, make sure he doesn't watch the needle insertion :). It is something we will have done often in our lives.

As for going gluten free right away, only do this if the doctor is not going to send him for biopsy after a positive blood result, or if you are sure you are going to decline the biopsy referral. Doctors generally like to verify a celiac blood diagnosis through endoscopy and biopsy. and for this you still need to be eating a gluten-full diet.


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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my now 15 yr old gets faint when he gets more than the pin prick. My SIL draws blood for her job. She said a lot of boys, especially in the summer, may be a bit dehydrated. That makes it worse. Make sure he has an extra glass of water or juice everyday until the test. Don't make a fuss about the blood draw or even mention feeling faint. Take a big sucker to eat while he is having the blood drawn. Even at 11 it might give him something else to focus on. The sugar can help with the faintness.



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You'd be surprised at how little the medical profession knows about Celiac. They know even less about about gluten intollerance. Most think the symptoms are D, weight loss, stomach pain or nausea. That's it!

We know there are MANY more symptoms. It sounds like you are on the right track. It's best to have him tested, but no matter what the tests show, I'd put him on a restricted, limited diet and see what happens.

It would be a good idea to have his vitamin/mineral levels checked too. A low level of calcium or magnsium could cause sore muscles and cramping, and weak teeth.

Dairy and soy can cause flattened villi too, so keep that in mind. A food log might help you discover what's going on?

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You guys are right. Didn't even think about the fact that if he's positive or if the dr would by chance order the biopsy then I really can't limit his gluten until it's all over. I think he's realizing he's been feeling icky now that I've made sure gluten is in his every meal lately. Last night he came to me and said his tummy didn't feel good...so I think he's starting to realize there might be a link to all of this.

Good idea about the sucker and making sure he's hydrated. He had shots earlier this year and the nurse had him sit for 15 minutes and drink a can of juice to make sure he was ok. He said his legs got really wobbly so it was good he relaxed a bit and had that juice before we walked out the door.

Thanks Bubba's mom...I'll bring that up to the dr. I hope she receptive to my requests. :)

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I'm glad you are getting him tested. Your son's symptoms sound a lot like my son's. His biggest symptom was bone pain and he got muscle cramps and aches, too. He'd always complain riding his bike, taking a walk or hike, etc. Now, when he gets glutened that is the biggest and first symptom. The thing that put him in the hospital was actually that his hip filled with fluid and caused severe pain and immobility.

He'd had random episodes of puking and diarrhea severe enough for ER visits and IVs from time to time, but it was always attributed to "the flu" or "food poisoning." Turns out his stomach problems and constipation were ongoing, though we didn't realize it fully until he was gluten-free and he felt better! Overall he just had a baseline of feeling crappy all the time.

The other big symptom that is gone now was dyslexia and ADHD. He actually couldn't read despite trying and really wanting to at age 10. Changing our diet got him reading fluently at at least a 5th grade level in just a couple months, without any more instruction. His concentration and ability to sit still and pay attention made huge leaps, too. We hadn't noticed vision problems but his ability to see and interpret small letters on a page was definitely fixed by being gluten-free.

He's also had anxiety. The anxiety is directly related to gluten - gluten will bring it on without fail. However, sometimes it comes back when we don't think he has been glutened.

He had asthma as a little kid and had lots of allergy symptoms. The asthma cleared up before the diet, but his "seasonal" (read: all year) allergies were really bad. We did a year of allergy shots before figuring out food had something to do with it. He's still doing the shots and I think they have helped, but it was miraculous that when we cut out CORN almost all his symptoms disappeared.

He has IgE reaction for corn, and while the seasonal stuff is a problem, with his diet on track the seasonal stuff doesn't bother him as much. When he has too many high histamine foods (like a glut of strawberries) his allergies are worse.

My son also had sores in his mouth a lot of the time. I had felt really bad about this because I thought maybe I'd somehow transmitted my herpes to him. Actually, they were not herpes sores, they were more like cold sores. He got some really bad outbreaks of them complete with fevers. But since we've changed our diet he hasn't gotten them. He hasn't gotten them from getting glutened so far as I know, so they may have been related to other things we changed.

(We are on the GAPS diet)

Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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