• 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

Newly Diagnosed ( I Think?) 4 Year Old..... Confused Mama
0

Rate this topic

13 posts in this topic

Recommended Posts

Hi! I am looking for information please:) My son Leo is 4 1/2 and has always been a very intense little fellow. He is allergic (non-IgE mediated) to dairy and soy which we found out about when he was 6 weeks old and would poop out blood when I consumed those allergens. He had horrible, horrible colic and was a very "high needs" baby and was a clingy, grumpy toddler. When he was about 2 I removed gluten from his diet as I suspected that something else was bothering him. There was no change in his behaviour so I reintroduced wheat after a few weeks.

Leo has always had dark circles under his eyes, and when tested his iron was always ok-but his ferritin was always low, especially considering the fact that I give him floradix almost every day. A couple of weeks ago his skin started looking yellow to me, not jaundiced, but sallow. I asked my husband what he thought and he didn't agree. A few days later my husband agreed that Leo did look yellow. We took him to the pediatrician that day, and I asked for bloodwork to be done. the pediatrician said that Leo looked fine, but agreed to the bloodwork. I asked for celiac testing and the ped denied it because Leo is so healthy and at the 95th percentile for height and weight. I explained that I really wanted it done-that Leo's poop was always loose (not diarrhea though), and the ped finally agreed. A few days later a nurse called from the ped's office. She told me that my son's tTG level was 633. 633!!! She used to work at the celiac clinic and she said this value was extremely high and that he most definitely has celiac disease, and the would book a GI consult for a scope. ALl of his other bloodwork (iron, ferratin, B12 etc came back normal).

I have decided to not get the scope done and I have removed all gluten from his diet (three days ago we started). He has tantrumed more in the past 3 days than he has in 6 months!! Is withdrawal possible??? Also, has anyone heard of such a high tTG value?? It concerns me that the number is so high, but that he hasn't been really symptomatic. Is that bizarre???

Also, what is the likelihood that my husband, my daughter and myself are affected????

Thank you SO much:)

Share this post


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


Yes! At least as an adult, I am having some mood changes making the gluten transition (about a week now). I believe it is common. Gluten can have an addictive like quality on your system, so it is natrual to have it seem worse before it gets better once going gluten free.

Did your son have the full celiac panel? Was he positive on the endomysial antibody test? I agree, my children are being tested next month via celiac panel, and if either of them are positive, we will not scope them at their young ages, just do gluten free as a family. If they are negative, we will retest as often as suggested by the pediatric GI-- they do not have symptoms.

Just be sure he had the full panel, and get a copy of all results.

Share this post


Link to post
Share on other sites

My daughter's was not that high when she was diagnosed at 21 months, but it was up there. It was through the classical presentation of celiac disease in my daughter that we realized it was present in my husband's family line. Once she was diagnosed he went through the testing and found out he also has celiac disease. One thing to think about (if you live in the United States) is that celiac disease is a disqualifier for military service, including the draft. However, without the scope the diagnosis is not "official". It was difficult to have my toddler to go through the procedure, but with a positive confirmation, then you never have to purposely introduce gluten into his diet ever again to get that "confirmation" when he gets older. And, given how my daughter and husband both react when they accidently get glutened, I would bet his sensitivity to gluten will only get worse as he gets older without gluten in his system.

Share this post


Link to post
Share on other sites

Yes! At least as an adult, I am having some mood changes making the gluten transition (about a week now). I believe it is common. Gluten can have an addictive like quality on your system, so it is natrual to have it seem worse before it gets better once going gluten free.

Did your son have the full celiac panel? Was he positive on the endomysial antibody test? I agree, my children are being tested next month via celiac panel, and if either of them are positive, we will not scope them at their young ages, just do gluten free as a family. If they are negative, we will retest as often as suggested by the pediatric GI-- they do not have symptoms.

Just be sure he had the full panel, and get a copy of all results.

Thank you for the reply and for clarifying that gluten withdrawals can happen!! He only had the ttg test done ( I think). The nurse said his level was so high that he most definitely did have the disease.

Share this post


Link to post
Share on other sites

Thank you :) Yes, I think it would be reassuring to get that positive biopsy. We live in Canada, and would get a tax break on gluten-free foods if we were to do it, but I just can't bear. I also don't know how long from now it would be booked for and I don't want to keep feeding him gluten-especially because his tTg is SO high.

My daughter's was not that high when she was diagnosed at 21 months, but it was up there. It was through the classical presentation of celiac disease in my daughter that we realized it was present in my husband's family line. Once she was diagnosed he went through the testing and found out he also has celiac disease. One thing to think about (if you live in the United States) is that celiac disease is a disqualifier for military service, including the draft. However, without the scope the diagnosis is not "official". It was difficult to have my toddler to go through the procedure, but with a positive confirmation, then you never have to purposely introduce gluten into his diet ever again to get that "confirmation" when he gets older. And, given how my daughter and husband both react when they accidently get glutened, I would bet his sensitivity to gluten will only get worse as he gets older without gluten in his system.

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you :) Yes, I think it would be reassuring to get that positive biopsy. We live in Canada, and would get a tax break on gluten-free foods if we were to do it, but I just can't bear. I also don't know how long from now it would be booked for and I don't want to keep feeding him gluten-especially because his tTg is SO high.

the best thing to do is to mantain the gluten diet, at lest to do the rest of celiac panel - antiendomisio, bowel biopsy, and probable repeat the TTg...

then, you may start the gluten free diet. take the gluten out now will be bad, because the biopsy may come negative...

u need to understand, wait just more few days, till your son have done the biopsy...

Share this post


Link to post
Share on other sites

There are two big reasons that I would want that biopsy for a child with his history:

1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac diagnosis. Can you get a copy of the test and share it with us?

2) If he has the Celiac diagnosis, it is covered under the ADA in America and in the EU you get free gluten-free food. So when he goes to school in the US (if that is where you live), they will make gluten-free lunches for him and in college as well.

I would want to know that Celiac was causing that number. What if it isn't?

Share this post


Link to post
Share on other sites


Ads by Google:


There are two big reasons that I would want that biopsy for a child with his history:

1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac diagnosis. Can you get a copy of the test and share it with us?

2) If he has the Celiac diagnosis, it is covered under the ADA in America and in the EU you get free gluten-free food. So when he goes to school in the US (if that is where you live), they will make gluten-free lunches for him and in college as well.

I would want to know that Celiac was causing that number. What if it isn't?

I pretty much said the same in Jodie's other thread. I completely agree he needs at least a full celiac panel.

Share this post


Link to post
Share on other sites

I was very concerned about my 5 year old having a biopsy because it sounded so invasive and kind of a big deal. He had never even been in a hospital (other than when he was born) and I tend to worry about everything. It turns out it was REALLY no big deal. He actually had a great day - they made it fun and relaxing (for him - not so much for me!). My older son (9) had one too and he too had a great day. They were both up and about within 30 minutes and full of energy and normal.

I had one too, and hardly even remember it. I wish I had gone first because it would have put me at ease.

I totally understand about you not wanting to wait to complete testing. My son's testing took almost 4 months and he clearly felt horrible the whole time. I felt like a terrible mother continuing to give him food that I knew was not good for him.

But, now we have a clear diagnosis. With the biopsy results, we have a starting point to compare to future procedures (if needed) to monitor his healing. With a clear diagnosis, we have a doctor's note that will protect my son in school, summer camp, college, etc. Without it, there is no guarantee that other's will comply.

The diet is for LIFE. You want to be as certain as possible that you get it right. Do it NOW before she has been gluten-free for a long time. My son has gotten more sensitive the longer he has been gluten-free. If we had to test him now, and feed him gluten for 3 months, it would be much, much worse than it was in the beginning.

Book the endoscopy and take the extra time trying out some new gluten-free foods so that when you are done with testing, you can just transition smoothly to a gluten-free diet rather than go cold turkey.

Everyone in the family should be tested as well. I tested positive, the other two family members negative. We now have a gluten-free house and everyone is feeling great. It was worth the wait.

Cara

Share this post


Link to post
Share on other sites


Ads by Google:


Thank you all so much for the advice. I appreciate it very, very much! When we received the call 6 days ago, I immediately put my son on a gluten-free diet-which was so easy!! He already has food restrictions (soy and dairy allergy), and we eat mostly whole foods, although the other day though he said he missed his brown bread (kamut) and his O's:( My son has had "normal" poops every day for the past 4 days.

Anyhow, my belief in the gut-brain connection has been affirmed!!!!

Although he has been reading for a few months, he has no interest in writing and only writes his name. Today I was writing a shopping list and I gave him some paper and asked him to write what he would like, and I expected scribbles. He returned the paper to me with "TOYS" written very legibly. It was amazing! I have decided NOT to do the biopsy-I have found research studies indicating that a very high level of tTG almost always corresponds with a positive biopsy result. Considering the dramatic change in his energy levels, poops, and writing, I will not be putting him on gluten. We have a great working relationship with our ped and I am sure that she will help us if we ever need a written diagnosis. Anyhow, thank you all so much!!!!

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
      108,137
    • Total Posts
      939,858
  • Member Statistics

    • Total Members
      66,117
    • Most Online
      3,093

    Newest Member
    T-lil
    Joined
  • Popular Now

  • Topics

  • Posts

    • Are doctors even getting close to diagnosing the actual number of cases of celiac disease? Or are they missing the vast majority? Researchers have said for some time that there are far more people with celiac disease than are being diagnosed, and that the vast majority of case go undiagnosed. If a new study by Canadian nutrition researchers is any indication, most cases of celiac disease remain undiagnosed. View the full article
    • Thanks for your input, everyone!  I will get tested soon enough for this condition, and I will definitely update you all when the results finally come in.
    • Have you had a sleep study? I have severe sleep apnea and used to sleep 12 hours a night and still was exhausted. Falling asleep at a stoplight exhausted. I do not fit the typical male and overweight stereotype either! But my cpap keeps me more well rested and alive. A sleep study is easy and it's the cost of an office copay. 
    • Have you ruled out the common Keratosis Pilaris (KP) also know as chicken skin?   https://www.aad.org/public/diseases/bumps-and-growths/keratosis-pilaris
    • Squirmingitch brought up the macaroon idea, I find Zsweet, and Swerve Sugar Free sweeteners do not throw me out of keto and I use them to make my "treats" You might sub it in these if your like that idea. I personally just use coconut and almond meal in my baked goods with high fat nuts like walnuts and pecans (Walnuts and pecans have so much oil in them you can butter then in a blender or food processes into a pour able sauce that can be used as a dressing or mixed with eggs and coconut flour into a dough)

      Also brought up batch beans....bad idea for keto, but to integrate a keto version, try cooking a roast in a crock pot, or a whole bunch of chicken breast. You can eat on it for a week just serve it over greens. Or Miracle Rice (zero carb rice) Batch cooking will become a life saver. (works with some foods) and meal preps give you time to just grab a pre fixed meal out of the fridge and go if you need to do something later in the day. First year I was gluten free I did this daily for myself before meat became a issue (I look forward to doing it again).
        CB brings up the issue of selenium and melotonin. YES this is a huge thing and completely evaded my thoughts. I consume massive amounts of seeds, like pumpkin, sancha inchi, hemp all high in these in addition to flax and chia. I tend to rotate my seeds to prevent intolerance issues and only the roasted ones. Look up GERBS allergen friendly foods for pumpkin, hemp, flax, and chia.  I suggest the ground flax under meals as the seeds I notice have issues, I personally always have to cook my chia, and flax seeds into egg dishes or I can not eat them. If you blend them in with the eggs  1-2tbsp seed meal to 1 1/2 cups eggs -1/2 cup almond milk 2tbsp coconut flour and some almond butter and stevia to taste let it set up 5-10mins then blend again you have a batter for pancakes/waffles/doughnuts/breading batter. >.> something like this I whim it as a chef.

      I was thinking of another think I like to snack on. Rythem Super foods roasted kale and the kale chips in moderation. I also crush the kale chips up and sprinkle over eggs as a condiment, Adds plenty of vitamins and the ranch flavor for this is amazing.




       
  • Upcoming Events