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6-Month Follow Up Test Results

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We just received the 6-month follow-up bloodwork results for my 8.5 year old son and I must say I am so relieved because they are normal. He was diagnosed via bloodwork and intestinal biopsy in August 2012, and at the time his TTG IGA was 66 (ref range <=19), his TTG IGG was 14 (which was a high normal, ref range <=19), and his total IGA was 143 (ref range 29-162). Recent bloodwork revealed that his TTG IGA is now 5, his TTG IGG is also 5 and his total IGA is 142. This is such a relief to my husband and I because his only truly noticeable symptom has been lack of growth and although we are extremely diligent about cross-contamination and following the gluten-free framework we had no way of knowing if what we were doing was working!

While we received the bloodwork results, we have his actual follow-up appointment with the GI next Wednesday so I have a million questions that haven't been answered. Can I assume that since his results are normal that his intestines are healed? Does he need a follow up biopsy to confirm? Does anyone know if the bloodwork results are cumulative over a specific time period or are they more indicative of recent changes?

He has yet to show significant growth, but he was also diagnosed with growth hormone deficiency in November and started growth hormone therapy about three weeks ago. I am hoping that we will see a significant growth spurt now that it appears we are on track with the gluten-free diet. Also, my husband and I virtually banned most processed items that we knew did not have gluten ingredients but were processed on shared equipment, would it be safe to try to incorporate some of these items into his diet to gauge his reaction? There are a few things that he really misses, such as a basil pesto tilapia that we found at Costco that didn't have gluten ingredients but was processed on lines with breaded fish. We have a shared household and while he has his own separate toaster, colander, and utensils, and all of our dinners are completely gluten free can I assume that he is not super sensitive to gluten (or should I make no assumptions)?

Any other specific items I should be sure to ask his GI doctor at his appointment?

I should also mention that his iron and calcium were checked in August and they were both normal and the doctor ordered a check of his Vitamin D when the current celiac panel was ordered and it was also normal although a low normal. It was 24 (ref range 20-100). He currently takes two gummy vites a day and two omega 3 fish oil gummies a day as well.

Thanks so much for your knowledge and support, while I do not post often, I do read many of the posts in this forum and the wealth of information available has made this journey more tolerable! :D


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I believe the normal blood tests mean that no autoimmune reaction is happening . . . not necessarily that everything has healed. My son took a full year to have normal blood results. The doctor was not overly concerned - she said it is different for everyone. We just went in for our 2 year check-up and his numbers are still good. She did run tests for vitamin deficiencies and thyroid problems but there was no mention of repeating the biopsy. I imagine if he is still not growing they might want to check again? My guy shot up 3 inches in the first month of being gluten free.

Strangely, my son was still having symptoms even though we were super careful. (no eating out, no processed food, etc.) Over a year we were still trying to figure out what we were doing wrong. He still felt sick, had joint pain, no energy. When his 1 year blood tests came back normal, we started looking elsewhere. Turns out the poor kid had Lyme Disease! Now that it has been treated, we are wondering if we need to be as careful as we have been. The doctor said, be a careful as you NEED to be . . . it is easy for us to experiment because he gets a stomach ache fairly quickly after being exposed. Not sure how you would tell if your child does not have many symptoms.



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Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free.



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My daughter had her 6 month follow up a few days ago! Her ttg went from 78 to 10 (<20 is negative), she tested negative on endomysial antibody (she was 4 times positive 6 months ago), her vitamin D was low 6 months ago at 27 and is now 52! She has gained 6 lbs total, but only about an inch (her growth was not affected though before). Joint pain gone.

I would raise the amount of viamin D you are giving- 24 is low! Ideal is 50-60. I give my 8.5 year old 2000 units a day and her levels are now beautiful.

Glad to hear great news!


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    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
    • Back on the gluten foods for about a week now and it's hell, if there was any doubt that the blood test wasn't accurate I can say with unerring certainty now it's definitely gluten causing the problems. The headaches, muscle pains, sore throat (reflux no doubt) and general feeling of malaise all back with a vengeance. As predicted it's worse this time round having done gluten-free for a while and no doubt same will apply in the other direction in 3-4 weeks' time. On the verge of giving up all hope now and this is before I find out how shredded my insides are followed by the further kick in the guts of discovering cross reactivity. What point is there carrying on if the future is this painful, lonely and miserable
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