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

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

13 posts in this topic

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:)

0

Share this post


Link to post
Share on other sites


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.

0

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.

0

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.

0

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.

0

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.

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...

0

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?

0

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?

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

0

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

0

Share this post


Link to post
Share on other sites

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

Ahhhh thanks

0

Share this post


Link to post
Share on other sites

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!!!!

0

Share this post


Link to post
Share on other sites

That's great! I'm so glad to hear of his dramatic improvement! B)

0

Share this post


Link to post
Share on other sites

Yeah! That is great. There are lots of recipes for gluten-free brown bread! Google it. My fav is from www.glutenfreeonashoestring.com

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
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined