• 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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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
Oli's Mom

Does This Sound Like Celiac?

Rate this topic

Recommended Posts

Hello!

My 6 year old son has a long history of medical issues. He has craniosynostosis, which was treated last year (with major surgery to open his skull and reshape it).

Starting in January 2012, he began having fevers and mid abdominal pains. He weighed 40 pound then. He continued to look pale and thin, so he had every test run my pedi could think of (except for Celiac, I guess). He was seen by a GI who diagnosed him with constipation based on his CT scan only. He was on major laxatives for five months with no improvement with his pain. A new GI has taken him off laxatives (he never was constipated) and did a follow up in three months. He noticed at the three month follow up my son has grown very little and has not gained weight. He now is up to 41 pounds (1 pound in 10 months). He still feels sick three days out of the week, is dizzy with headaches and occasional stomach pain and very grumpy. He catches viruses often and has a hard time getting over them. He seems to be delayed in school.

He also had low globulins on a recent blood test, which my pedi said was normal (the GI begs to differ). Our GI just ordered all the antibody tests for Celiac. My husband and I are almost wishing for Celiac, as we would do anything to help our son feel better. The other option is that all his symptoms are related to pressure in his brain, which would be a worse diagnosis.

So, what do you think? Celiac? Thanks so much! Jessica

Share this post


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


I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

Share this post


Link to post
Share on other sites

I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

Thank you so much Lisa, for the info. I'll be sure to post when we get his results back!

Share this post


Link to post
Share on other sites

I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

What she said!!

Share this post


Link to post
Share on other sites

So, we got his results back! He is low in all of his IgGs, especially IgG1 (421). The IgA is normal. His TT IgA was only 2.3 and his TT IgG was 0.48.

So the Celiac tests were negative, but I wonder if his low over all globulins had anything to do with this? The GI will call me on Tuesday. I'm wondering how much I should push for the biopsy or just try gluten free for a while. I'm pretty convinced he's got issues with gluten after monitoring his diet for two weeks.

Share this post


Link to post
Share on other sites
Ads by Google:


Hi Jessica-

I am a bit confused that you say his Ig's are low. Do you have the ranges for

Total IgA

Total IgG

If these are indeed low, all celiac blood tests would be inaccurate in detecting Celiac Disease.

Regardless of the reason he tested negative, having the endoscopy to obtain celiac biopsies would be a good idea given his symptoms. In addition to the biopsies, the endo does take a look at other parts of the digestive system which can be of some benefit.

As you know the option would be to remove ALL gluten for at least three months. The disadvantage here is if he improves gluten free it can be very tough to go back to eating gluten if you decide to obtain a diagnosis. Perhaps ask the doctor during the discussion regarding possible endoscopy - if he would diagnose either Celiac or NCGI if your son's symptoms resolve while gluten-free?

Good luck on Tuesday :)

Share this post


Link to post
Share on other sites


Ads by Google:


Thanks so much!

Total IgG is 534 (Online says should be higher than 667)

Total IgA is 59 (online says should be higher than 79-but that seems high)

Total IgM is 61 (online says should be higher than 40)

These are low (but on the chart) on the reference range provided by the lab, but clinically low on a chart I found for 6-8 year old kids.

Not sure what to go by!

Share this post


Link to post
Share on other sites

That Total IgA is low from all the numbers I've seen, so all his IgA based celiac antibodies tests would be inaccurate as he cannot produce the antibodies measured in those tests -- IMO another good reason to take a look/obtain biopsies.

I'm not clear on the IgG or IgM numbers - would be good for you to verify with doctor whether he is low/deficient in all of the Ig's.

Share this post


Link to post
Share on other sites


Ads by Google:


His GI just called and left a message saying everything is normal. He doesn't have Celiac. See you back in three months. :blink:

Share this post


Link to post
Share on other sites

His GI just called and left a message saying everything is normal. He doesn't have Celiac. See you back in three months. :blink:

:blink: is right

Did he happen to explain why your son's tests are accurate enough to dismiss Celiac Disease if he is not producing enough IgA to have IgA based tests be reliable?

As I see it, you have two choices:

Find another doctor that specializes or has experience with Celiac Disease - a local celiac support group may be able to help find such a doctor in your area.

Remove ALL gluten to monitor for symptom improvement &/or resolution. The diet itself is a very good test and will be good information to provide to another doctor down the road.

Share this post


Link to post
Share on other sites

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

Share this post


Link to post
Share on other sites


Ads by Google:


I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

It is a good idea - perhaps he'll want to biopsy if it's positive :)

Share this post


Link to post
Share on other sites

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

This does not make sense either. You can do both at the same time. The genes are NOT affected by lack of gluten :blink: What is he talking about???

Edited to say: Just saw Lisa's reasoning; hadn't considered he might be persuaded to do another biopsy, in which case continue with the gluten :D

Share this post


Link to post
Share on other sites

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

Just so you know that gene testing is not diagnostic. You can have gene(s) and not have the disease, and not have either of the two common genes and still be celiac.

Share this post


Link to post
Share on other sites

Hi Jessica, Your story reminds me of my son and my struggle to get a clear diagnosis. Have you considered having yourself or your husband tested? That was where the process with my son led me. I recognised some symptoms and did test positive, which makes me think gluten-free will help my son, regardless of endo. Without that, his GI would probably not have looked further. Good luck! Megan

Share this post


Link to post
Share on other sites

He had the test on Friday. It should take about two weeks to get back. We are also going to have his dad tested as he has always had bowel issues. If all tests are negative, we will give it a rest. If anything is positive, we will pursue a Celiac diagnosis! Thanks all for your great advice!

Share this post


Link to post
Share on other sites


Ads by Google:


Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!

Share this post


Link to post
Share on other sites

Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!

From the Univ of Chicago Celiac center about "stool Celiac tests"

"Why don

Share this post


Link to post
Share on other sites

HI PA Celiac Mom. I'd recommend reading a bit on here about appropriate testing and also googling a bit. I'm dealing with a late celiac diagnosis for myself and for my son who I believed was screened. My son was first "tested" through stool screening for fats in the stool at 18 months. I was told he didn't have celiac based on this. The main reason for testing was markedly small stature. This has gotten worse and I also followed up with another GI when I switched insurance, about a year ago. GIs are the experts in this, right? I've learned not really. She also did some stool testing.... In addition to short stature my son developed symptoms like your son's, terrible diarrhea going on three months now. We have the endoscopy tomorrow so an end is in sight.

I guess my main point is that there are a tragic number of false negatives. This is much worse than kids being missed for screening because as moms we sort of file it away. Doctor said no, check that off the list. I'm not a crazy, anti-science person, it's just I've seen firsthand how this is just not quite on the radar for doctors. Good luck!

Share this post


Link to post
Share on other sites

Okay. I just received his blood results. They say:

HLA Class II, Locus DQB*, Allele 1 02:01

Results: Positive for HLA-DQA*05 and HLA-DQB*02 alleles

HLA Class II, Locus DQB*, Allele 2 05:01

Patient has the HLA-DQ2 antigen, but does not have the HLA-DQB antigen

HLA_DQB Genotyping Interpretation

If less than 2 alleles are reported for a locus , the patient is likely homozygous.

I have not yet spoken with his doctor. His appointment is on Tuesday. I know he does have the Celiac gene. I am wondering based on the results if he is homozygous for it (which would make me more sure of the diagnosis).

Share this post


Link to post
Share on other sites

Insist on an endoscopy and biopsy. Blood only tells so much. My son was just like yours, only anemic too, and after 2 years of being told he was "just fine" even though he was barely growing and cried every day about his stomach I demanded they scope him. As in refused to leave until they agreed to do it. I didn't even know about celiac at the time, and no tests were done for it. The point is, you KNOW something is wrong inside his guts, so MAKE them look.

What they found was one of the worst cases of celiac the dr had ever seen. And what followed was testing for the rest of us (which were positive for my daughter and I) and positive biopsies for us as well.

Doctors are useful for doing the tests. But in my experience and opinion, parents are better at getting to the bottom of things. Do NOT let them push this undeer the rug, your son needs you!

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
      108,384
    • Total Posts
      940,978
  • Member Statistics

    • Total Members
      66,393
    • Most Online
      3,093

    Newest Member
    geni7476
    Joined
  • Popular Now

  • Topics

  • Posts

    • These days there are tasty equivalents for most foods. So you're just changing brands. Here's my list of gluten free equivalents to get you started: If you're currently on a meat, potato, and veggies diet then relax because this is gonna be easy. If not you might want to switch to a meat, veggies, and potatoes diet at least for a while.   Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time. Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier. Bread: Canyon bakehouse without question is the most realistic tasting bread.
        Schar comes in a close second.
          Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
          Canyon bakehouse white bread makes fantastic toast. It has a very slight
                       sweet taste to it. My friend says it tastes like normal bread. The
                       only difference to me is the sweetness.
          Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
          Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need to be toasted.
          Schar baguettes are fantastic.
          Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
          Etalia has a great boule if you prefer artisan bread. (Colorado) Pizza crust:
          Shar makes a good thick and chewy crust.
          Udis makes a good thin and crispy crust.
          Etalia makes a great New York crust. (Colorado) Pasta:
          Barilla makes the best pasta. Tastes the same as normal. Spaghetti cooks the best.
          RP has a frozen pasta that I'm going to try next. Flour:
          Pamelas all-purpose flour is great for making gravy and batter for fried foods. Cereal:
          Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops. Cookies:
          Kinnikinnik makes a decent Oreo equivalent.
          Kinnikinnik makes a good nilla wafer
          Mi Del makes a great ginger snap.
          Goodie Girl mint slims - fantastic girl scout mint cookie equivalent Cake:
          Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time exactly right. It is a very small window of time. Too long and it's too dry. Frozen meals:
          Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna. Restaurants (not from personal experience, just from research)
          Chinese – PF Changs. Employees are supposedly trained in gluten free.
          Burgers – In N Out. The only thing here that is not gluten free are the
                      buns so it is very easy for them to do gluten free. They are
                      also trained in it. They are only out west. Road Trip!
          Outback steakhouse. Employees are supposedly trained in gluten free. How
                      good they are depends on where you live.   If you are willing to cook from scratch it's fairly easy to make a good gluten free equivalent to your favorite foods.    
    • I do light weights at the gym. Will increase weight when I get better.  
    • I got a personal trainer and go to the gym twice a week. It's nice to think about other things. And I don't go crazy at the gym. Light workout so I stop breaking things all the time. I haven't torn a tendon in months.  
    • I hear you on this, I live alone, isolated by allergies, and this disease often, spending the evenings alone wishing someone would come by and join me for tea, coffee, or hell even board games sound great at times.  I find myself trying to help others on these boards with my knowledge, feel useful and needed. I drink flavored teas, from republic of tea, and coffee flavored like desserts from Christopher bean coffee to "treat myself" and I try to sometimes get online like I used to as a kid and play video games (nerve damage makes games frustrating , hard, and I can not do multiplayer anymore) Best thing to do is distract yourself, workout, clean the house is always mentally rewarding, hobbies (if you can afford them). I also find peddling on a stationary bike while reading or watching a show to help burn off energy/stress while distracting my mind.
    • Nuts are high in protein so if you can eat them, then go for it. You may not be able to tolerate whole nuts. I found I can't eat almonds but I am fine with almond meal. Dried beans are great sources of protein as well. How about making re-fried beans from dried pinto beans?  I get my almond flour from Barney Butter since I have an intolerance to peanuts. Barney Butter products are peanut free.
  • Upcoming Events