• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
ML5

Could This Be Celiac & Testing Question

Rate this topic

Recommended Posts

Hello. I just joined after reading so many helpful and informative posts. Makes me think I'm not crazy! Hoping for some insight from others.

We are waiting on celiac blood work results for my 7 year old daughter. I do not know the specific tests that were ordered other than celiac. She has had other "regular" blood work done recently (CBC, thyroid, sed rate). Everything is normal.

She also had ImmunoCAP testing done 1 1/2 months ago. Positive for allergies to Sesame, Soy, Peanut, Corn and Wheat. We eliminated all of these from her diet -- no easy task -- for 3 weeks. Skin issues improved (rash, itchiness).

We saw an allergist last Wednesday who said she wasn't convinced her skin symptoms were related to food allergies (also allergic to molds, trees, grass; diagnosed with allergic rhinitis and mild intermittent asthma). She told us to do a food challenge and reintroduce one new food allergen per week and monitor symptoms. We started with wheat (it was her lowest score; .82).

Other symptoms she has been having:

Constipation -- for 6 weeks (1 BM in last 10 days or so even with Miralax)

Severe Reflux -- didn't know this was back; had stopped meds since "volcano" feeling up high was gone; pain in lower abdomen I attributed to constipation; back on Prevacid now

Stomach pain - "my tummy hurts" - often can't explain specifics

Sore throat -- recent, assume due to reflux

Fever - low grade fever since Fall of 2009. Did blood work then and never determined cause. Last couple of months she has fluxuated up to 100. Note: before low-grade fever began, she had strep once a month three months prior, and a flu shot 2 weeks before.

Weight gain - She will be 8 this month. She is 25% in height. In 13 months she gained 25 pounds (10 in the last 5 1/2; 15 the 8 months before).

Aches and pains - can't tell for sure if this is joint/bone or muscle pain.

Low energy - Less stamina. Less interest in playing outside than previously (has a sister 1 year older and she can't keep up with big sis' activity level).

"I don't feel good" -- hear this many times a day

Tic? - She has a "one-eyed blink" that comes and goes -- has had for years; saw a pediatric neuroligist with no explanation.

Questions:

1. Does this sound like Celiac symptoms?

2. Could this be a reaction to gluten: She started back on wheat last Wednesday. Had cookies, pizza, bread over next few days. Monday had crackers at lunch and 2 slices wheat bread for dinner. Monday evening temp was up to 101.8. Gave her Motrin before bed. Next morning at 6:00 am temp was 103.5. No other viral type symptoms (still her other "regular symptoms above").

3. Wondering if going off gluten for 3 weeks, then back on 5 days before blood work will mess up the test results.

4. Doc we saw this week is a pediatrician and was recommended by a friend with celiac family. At what point do you decide to see a GI?

Any insight/comments/suggestions would be greatly appreciated!

Signed,

ML5 -- Worried Mom

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


It sounds A LOT like Celiac. Unfortunately, being gluten free for 3 weeks may have caused her antibodies to drop below detectable levels- but maybe not. My son still tested positive (but barely) after nearly a year of strict gluten-free. Mine and my daughter's antibodies dropped to zero almost immediately however.

Keep her eating gluten for now, as they will likely want to do anl endoscopy and she needs to be eating gluten for that. When all of the testing is over with, definitely do a strict gluten-free diet for a few months, even if the tests are negative. (If the tests are positive it is gluten-free for life however).

Hope you get some answers soon!

Share this post


Link to post
Share on other sites

With regular fevers that high I would see a specialist. Some of the symptoms sound like Celiac but I haven't heard of high fevers with it? Does anyone else have comments about fevers with gluten intolerance/ celiac?

Good luck and hope they figure it out soon for you so she can feel better!

Share this post


Link to post
Share on other sites

Hello. I just joined after reading so many helpful and informative posts. Makes me think I'm not crazy! Hoping for some insight from others.

We are waiting on celiac blood work results for my 7 year old daughter. I do not know the specific tests that were ordered other than celiac. She has had other "regular" blood work done recently (CBC, thyroid, sed rate). Everything is normal.

She also had ImmunoCAP testing done 1 1/2 months ago. Positive for allergies to Sesame, Soy, Peanut, Corn and Wheat. We eliminated all of these from her diet -- no easy task -- for 3 weeks. Skin issues improved (rash, itchiness).

We saw an allergist last Wednesday who said she wasn't convinced her skin symptoms were related to food allergies (also allergic to molds, trees, grass; diagnosed with allergic rhinitis and mild intermittent asthma). She told us to do a food challenge and reintroduce one new food allergen per week and monitor symptoms. We started with wheat (it was her lowest score; .82).

Other symptoms she has been having:

Constipation -- for 6 weeks (1 BM in last 10 days or so even with Miralax)

Severe Reflux -- didn't know this was back; had stopped meds since "volcano" feeling up high was gone; pain in lower abdomen I attributed to constipation; back on Prevacid now

Stomach pain - "my tummy hurts" - often can't explain specifics

Sore throat -- recent, assume due to reflux

Fever - low grade fever since Fall of 2009. Did blood work then and never determined cause. Last couple of months she has fluxuated up to 100. Note: before low-grade fever began, she had strep once a month three months prior, and a flu shot 2 weeks before.

Weight gain - She will be 8 this month. She is 25% in height. In 13 months she gained 25 pounds (10 in the last 5 1/2; 15 the 8 months before).

Aches and pains - can't tell for sure if this is joint/bone or muscle pain.

Low energy - Less stamina. Less interest in playing outside than previously (has a sister 1 year older and she can't keep up with big sis' activity level).

"I don't feel good" -- hear this many times a day

Tic? - She has a "one-eyed blink" that comes and goes -- has had for years; saw a pediatric neuroligist with no explanation.

Questions:

1. Does this sound like Celiac symptoms?

2. Could this be a reaction to gluten: She started back on wheat last Wednesday. Had cookies, pizza, bread over next few days. Monday had crackers at lunch and 2 slices wheat bread for dinner. Monday evening temp was up to 101.8. Gave her Motrin before bed. Next morning at 6:00 am temp was 103.5. No other viral type symptoms (still her other "regular symptoms above").

3. Wondering if going off gluten for 3 weeks, then back on 5 days before blood work will mess up the test results.

4. Doc we saw this week is a pediatrician and was recommended by a friend with celiac family. At what point do you decide to see a GI?

Any insight/comments/suggestions would be greatly appreciated!

Signed,

ML5 -- Worried Mom

Some of the symptoms do sound like they could be celiac, but there is likely something else going on as well. Celiac would not necessarily cause fevers, a low-grade fever is generally a sign of infection somewhere. Among the tests they did before, was your daughter tested for juvenile rheumatoid arthritis? That causes a lot of similar symptoms and actually can be related to celiac.

Did the do an ANA test?

Also, if she is having a continuing sore throat, and has a history of strep, I'd ask them to culture the throat for what IS there, not just to rule out strep. They also could do the long version, the rapid strep doesn't always catch it. My daughter was having throat trouble for over six months, they kept testing for strep and finding nothing. I finally got frustrated with the docs and said "it is NOT NORMAL to have swollen inflamed tonsils all the time, that are also draining pus. Can you pleas culture this throat and find out what is growing there?" Turns out my DD had a strep B infection, not strep A which is what they are looking for with the tests they usually do. Strep B is not as big a deal as strep a, but it WAS causing a problem.

Could she possibly have a mononucleosis/glandular fever thing going on? She is young, but that's also a possibility.

Share this post


Link to post
Share on other sites

ANA was negative in 2009. Doc said if rheumatoid problems it would have shown up then. Of course this is the same doc who said celiac is diarrhea only; not constipation.

Sore throat is recent. It seems to correlate with other reflux symptoms. Allergist looked at it and did comment her tonsils were large, but said that was just how hers are. ???????

We are waiting on celiac blood results as well as ASO titer. ASO will show strep infection if present? I don't know about the strep A vs B.

I don't think mono was tested. Will keep this in mind.

Thank you for the comments!

Share this post


Link to post
Share on other sites
Ads by Google:


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
      108,966
    • Total Posts
      943,697
  • Member Statistics

    • Total Members
      67,276
    • Most Online
      3,093

    Newest Member
    Beth N
    Joined
  • Popular Now

  • Topics

  • Posts

    • Me too. I still get transient lower back pain occasionally when my bladder or colon is full. It goes away immediately on voiding. Regardless of anything other diseases you may have, being wheat free gives you relief so even if not Celiac you are Non Celiac Wheat Sensitive. There are over 200 symptoms that are improved with GFD gluten free diet. Google it. It is an impressive list. In any case, while it is good to have a diagnosis, there is only one treatment, do not eat wheat and deal with the inevitable malnutrition damage.(think Biafra babies 1970.) Most will improve over time. Whatever doesn't improve should be investigated to be safe, but realize that recovery may take years. Wheat flour used should be limited to Paper Mache sculpture and library paste.  
    • Here is a partial list of what I no longer suffer from as a result of not eating wheat. Some like the sleep apnea and gerd and back pain and addiction to alcohol were almost immediate. The foot pain is improved to just numbness sometimes. My long term depression went away when I added vitamin D 10,000 iu a day for a year, but the improvement started almost immediately. Muscle tone and energy improved when I added iodine. one sheet sushi seaweed a day. My Fibromyalgia is controlled with 15 mg oral Prednisone a day. I remember as a kid waking up and having to pick the dried mucuos off the roof of my mouth. That is gone and for the first time in my life I am a nose breather. Drink lots of water to help with the mucous if it is thick. Some mornings mine is like rubber cement. I need to quit smoking now.  You can improve have faith, but healing takes time. Stay the course. A Romaine lettuce salad everyday helped the gut pain. Gerd shortness of breath sleep apnea back pain snoring prostrate hypertrophy contact lens protein buildup night vision improved cataracts reduced head hair growth foot pain sleeping no more than 2 hours at a stretch slow healing no energy. Pretty much bed ridden. 
    • Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition. Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.   well said, doesn't need a label.
    • We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.
    • Hi Kurasz, How's it going?  Any change for the amazingly better?  Or slightly better?  
      If not, hang in there, and keep praying! :)
  • Upcoming Events