Newbie Mom - How is my son feeling?

[sjcdedmon]

My 13 year-old just tested over 300 on the tTG-IgA test.  

We are unable to get into a pediatric GI until late May, and so I thought I would ask some other people with celiac this question.

Has anyone had numbers this high or close, and can you please tell me what he is likely feeling in his body? He has been gluten free with a few mistakes for about 6 weeks. His cheeks are still intermittently red, and his mood swings are reduced but somewhat present. He seems to feel tired and mopey most of the time.

Part of what led me to have him tested was what I perceived as a lack of age-appropriate vitality. Does anyone have any hunch on how many months of gluten-free adherence before he might start to regain some strength?

 

Thanks!

[cyclinglady]

Welcome to the forum!  

Did your doctor tell you to put your son on the gluten free diet now?  Typically, an endoscopy is required to make a diagnosis of celiac disease and not just the blood test, especially, when just the TTG test was done.    All celiac testing (blood and endoscopy/biopsies) requires the patient to be consuming gluten for the tests to be accurate.   

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Perhaps, you can contact the GI's office and let them know your situation.  You may be able to get an earlier appointment.  The GI may be able to offer advice before you see him.  

Besides getting an accurate test result, it is really hard to be off gluten and then have to go back on it again.  Typically, symptoms get worse.  

Healing?  Kids tend to heal fast.  It can take weeks, to months to years to feel well.  Why?  It depends on intestinal damage and how many times you accidentally get "glutened".  Each gluten exposure can trigger the autoimmune response.  Be sure to read our Newbie section under "Coping" for tips.  Try to stick to a whole foods diet and learn all that you can about cross contamination!  

He will feel better soon, but getting a firm diagnosis will be helpful for school accommodations (as he may need to get back on a gluten diet.)

[Estes]

13 hours ago, sjcdedmon said:

My 13 year-old just tested over 300 on the tTG-IgA test.  

We are unable to get into a pediatric GI until late May, and so I thought I would ask some other people with celiac this question.

Has anyone had numbers this high or close, and can you please tell me what he is likely feeling in his body? He has been gluten free with a few mistakes for about 6 weeks. His cheeks are still intermittently red, and his mood swings are reduced but somewhat present. He seems to feel tired and mopey most of the time.

Part of what led me to have him tested was what I perceived as a lack of age-appropriate vitality. Does anyone have any hunch on how many months of gluten-free adherence before he might start to regain some strength?

 

Thanks!

I am 41, female and was told my Iga was 100 1 month ago.  I did not want to lift my arms, too much effort.  I was on the couch and nauseous wondering what it felt like to be able to complete everyday activities.  I am not a young boy but I bet he feels like his body is working hard or fighting a battle that he can not control.

Now I have started rock climbing again and am going on walks.  Every other day is not productive as I still need extra rest.  I have good days in between and I have hope.  I am delighted they caught this so early for him.

Based on my high numbers I was given a diagnosis just with blood tests.  This seems to be unusual and most people get additional testing (endoscopy).

I completely understand the tired and mopey.  I have been the same way.  I treat myself to good movies and a little wine.  Would he enjoy family couch time and some new movies or books?  Maybe popcorn?  

[ChiaChick]

Just a thought... You mentioned that your son has a rash on his face. Has he been tested for Lupus? Auto-immune diseases can go hand in hand, and lupus is characterised by a facial rash. I am no expert, but have just had the testing for this myself (which came back negative in my case). Perhaps it is less likely, but given the seriousness of Lupus, I would rather rule that one out.

Your son needs to be eating a good quantity of gluten for 6-8 weeks prior to the biopsy from what I have read. This is to enable the biopsy to show the damage. Without eating enough gluten, the gut will heal, and any celiac damage may not be apparent, which could delay getting a diagnosis. As sad and horrible as it is, he needs to be fed gluten so that he may be diagnosed. My two sons both had blood tests yesterday, and we are waiting for those results. In the interim, they remain on a gluten diet. If the blood work (particularly the genetic component) is negative, they will start a gluten free diet. If positive, they will be referred on for biopsy, and continue on the gluten diet.

[Gemini]

The doctor should be doing a full Celiac panel and not just a tTg.  If a full Celiac panel is done and the tTg and EMA are positive, then a biopsy is not needed for confirmation.  However, in minor children, doctors do not follow this protocol and seem to want to insist on a biopsy. I always felt it depended on blood results and symptoms in order to have a biopsy done.  I had the full Celiac panel, failed all the tests by large numbers (close to what your son had) so refused the biopsy.  I was too sick anyway to do one but there was no doubt I had Celiac Disease.

Your son is feeling about what many people feel when their tTg is still that high.  Six weeks is just the beginning of healing so he has a while to go and it still depends highly on the person.  I was so sick that when I went gluten free, I started to heal immediately and the extreme gastro symptoms cleared up relatively fast. I was able to return to work after 1 week but was still tired for awhile, until the anemia resolved. I was still able to function well enough at work, though.

If you want to have a biopsy for your son, then continue to feed him at least 1-2 slices of wheaty bread per day or the equivalent until he is scoped.  Although, I think a doctor would have to be an idiot to not recognize Celiac in a person with a very high tTg like this. Don't worry....your son will heal well because he is young but do give it some time after the testing is complete.

[Marcindy3]

My 10 yr old daughter was just diagnosed & hers was 432. That was 4 weeks ago & she continues to vomit. We've been very careful about what she eats & we're at a loss. She's getting depressed, sad, & tearful a lot. She says it's not fair & she just wants things to go back to normal. Her dr says she will continue to vomit for awhile while her stomach heals & for her levels to go down. 

[Celiac Nutritionist]

I know there has been a lot of suggestions to go and talk to you doctor already - so I am on repeat - to get the best / accurate results - gluten should be eaten prior to the scope being done. 

 

I hope that you can get/ or already have been able to get the appointment bumped up  - keep calling the doctors office and keep pressing them to move your appointment closer - I have appointments move up many times! 

[sjcdedmon]

Thank you so much everyone. Glad to hear that the mopey aspect of his healing is normal. He did have the full celiac panel, and the control came back normal so we can assume accuracy with the TTG-IGA.  

Given the fact that his numbers went over 300, I am going to keep him off of gluten. The extreme nature of his TTG IGA indicates that he has been suffering with this, as I have suspected, for most of his life and the damage is severe. Three additional months of protracted suffering is simply beyond conceiving, nor is it necessary. 

It seems, from what I've researched, that the TTG IGA numbers stay elevated for some months after removal of gluten even in people with relatively low (yet still insanely high) readings of 200 or less.  If his slow healing is any indication, the damage is still there to detect on a clinical level.  I would probably submit him to a scope and biopsy for the sake of having a baseline for his GI health if that seems indicated. But, not to confirm celiac alone. 

I have pestered the GI office, but to no avail yet. 

[sjcdedmon]

On 4/26/2016 at 9:48 AM, Marcindy3 said:

My 10 yr old daughter was just diagnosed & hers was 432. That was 4 weeks ago & she continues to vomit. We've been very careful about what she eats & we're at a loss. She's getting depressed, sad, & tearful a lot. She says it's not fair & she just wants things to go back to normal. Her dr says she will continue to vomit for awhile while her stomach heals & for her levels to go down. 

I'm so sorry to hear this. The social aspects of avoiding wheat have been painful for my son, too. He wants everything to go back to normal. Did your doc happen to say how long he expects her to take to heal?

 

[Marcindy3]

Not really. She just got out of the hospital for the 2nd time. Upon discharge, they said she will continue to vomit. Makes it very hard to go to school. 

[Midwitch]

On 26 April 2016 at 1:48 AM, Marcindy3 said:

My 10 yr old daughter was just diagnosed & hers was 432. That was 4 weeks ago & she continues to vomit. We've been very careful about what she eats & we're at a loss. She's getting depressed, sad, & tearful a lot. She says it's not fair & she just wants things to go back to normal. Her dr says she will continue to vomit for awhile while her stomach heals & for her levels to go down. 

Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  

[Midwitch]

On 2 May 2016 at 11:44 PM, sjcdedmon said:

I'm so sorry to hear this. The social aspects of avoiding wheat have been painful for my son, too. He wants everything to go back to normal. Did your doc happen to say how long he expects her to take to heal?

 

I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them. 

 

I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.