Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My 6 Year Old Just Diagnosed - Question About Reflexes
0

8 posts in this topic

Phew! A place to get some answers!

My 6 year old had her celiac panel come back positive. We had been on a gluten-free/DF diet for 2-3 months when her test still came back positive.

We only found out because we were testing her D levels and allergy testing and our dr decided to do celiacs as well. T'was a bit of a shock.

She is seeing a chiro and when we had her consultation, he checked her reflexes and she did not have any at all in her knees. Two weeks later, still nothing.

Something deep in my gut is telling me this is important, and I am worried.

We are going to see a dietician tomorrow, but apart from that - not sure what our plan of action should be.

I would prefer not to do a biopsy if at all possible (I hate anesthetic and kids), our family practice doc agreed because her results were so positive.

My son (3) and I are eating some gluten again, he and I show quite a few symptoms, we are having the test at the end of the month, we are only eating 1 slice of bread a day, am hoping that is enough as the joint pain I have (and have had since bring 18 - no dx ever made, arthritis ruled out) is not fun, as is the brain fog.

So...reflexes? Any input please, and what else should I be asking for.

With thanks

Sarah

0

Share this post


Link to post
Share on other sites


Ads by Google:

Some people do not react to the knee reflex thing. I certainly don't (which doctors have said it was fine). I also have motorskill issues (i cannot, for example, skip, do anything that requires a lot of balence (such as a climbing up rocks and down them, or somewhat steep surfaces), i have to see going down stairs or else i loose my balance somewhat (weird huh?), etc). I also had a lot of issues when i was younger with walking and whatnot.

Also,, i have bad knees (they aren't aligned properly with my body, which i found out years ago). They ache when i walk to much or if i'm on concrete to long or if a storm is coming in. No arthritis, no nothing. I've had multiple xrays and have went through physical theraphy.

I thought i'd add that i don't remember them moving. My mom says they may have moved a smidge, but i don't ever remember it and i believe the doctor noted it as it was done.

0

Share this post


Link to post
Share on other sites

Thanks - I know she had reflexes before, which is why I am concerned. She had complained about her legs before, but her old dr put it down to growing pains.... :(

0

Share this post


Link to post
Share on other sites

Slow reflexes can also be a sign of hypothyroidism (Hashimoto's) which is more common amoungst celiacs than the regular population. To test thyroid function, request a TSH (should be near a 1), free T4 and free T3, and TPO ab (to see if there are antibodies attacking the thyroid).

Best of luck. I hope you find some answers.

0

Share this post


Link to post
Share on other sites

I think this can resolve on a gluten free diet and better absorbtion of vitamins, minerals, and fats.

So work with her doctor and definately explain what is going on, so further tests can be run.

0

Share this post


Link to post
Share on other sites




Thank you - we met with a dietician today and are definitely going to run more blood tests to check her out a bit more. We had only run the celiacs panel and a CBC before.

0

Share this post


Link to post
Share on other sites

Hang in there! Previous posters alerted you to some really good additional information--especially the thyroid stuff. From what we are learning, it takes 6-12+ months for kiddos' bellies to heal and 12-36 months for adults to heal.

In our family, we had one 6 yr old who had a REALLY difficult first three months off of gluten. I don't really understand why, it just was very hard on her--lots and lots of belly aches--and some leg pain and then it all evaporated. Our other twin went from intense muscle/joint/bone aches with itching 2-3 x a week to about 1x a month. We happened to be at our (rockstar) cardiologist who asked how the girls are doing...I told him about the remaining aches and itching. He said, "Reduce her lectin intake and see how she does." (I had no idea what lectins even were). We've cut out tomato and bell peppers (of which we ate a lot of) and she has been 100% since.

The trickiest part of Celiac and all of this is that every individual is different. This forum is so excellent because so many people openly share their experiences. Take what works for you and your family! Wishing you as smooth a path as possible to full returned health for you and your kiddos!

1

Share this post


Link to post
Share on other sites

Thank you! - we go to her dr's tomorrow so I am mentioning this and what steps to take next.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,334
  • Topics

  • Posts

    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,131
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined