Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Trying To Understand My 8 Yr Old Sons Blood Work

jacksonsmummy

Recommended Posts

jacksonsmummy Newbie
jacksonsmummy
Posted

I ihave had my son on a low sugar, no gluten, Dairy,peanut, soy,..... elimination diet due to a constellation of odd symptoms. He had rashes, low grade temps, chronic head ache, tummy aches, mood swings, joint pain and low energy. We brought back corna nd he was fine, we brought back soy and he was fine but I tied wheat and he started with thee temp and rashes... same when I tried Dairy. So we went back to gluten and diary free. Last week he saw a Rheumatologist and he ran a TON of tests. He said the Celiac test may not work because he already had him Gluten free for over 6 weeks. Well it can back with a positive ttg Ab, Igg  the rest were negative. Is this a significant result? I am waiting on a call to explain what I am looking at but I would love any input you expert parents might have!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Too long off of gluten for any celiac tests to come back positive, unless of course, he was still being cross contaminated on a day to day basis.

jacksonsmummy Newbie
jacksonsmummy
Posted
  • Author

But what I am saying is that he did has a positive test, it was the ttg Ab Igg which I am told can be positive off gluten because it is not an indicator of Glten being present but an antibody associated with the Leaky Gut component

nvsmom Community Regular
nvsmom
Posted

But what I am saying is that he did has a positive test, it was the ttg Ab Igg which I am told can be positive off gluten because it is not an indicator of Glten being present but an antibody associated with the Leaky Gut component

I have not heard about the link of ttg IgG to a leaky gut. I know ttg IgA is often linked to other diseases (infections like e. coli or autoimmune like Hashimoto's or crohn's) so I assume ttg IgG is as well, but I don't know the connection to a leaky gut.

 

I do know that the ttg tests are pretty specific to celiac (about 90-95% specific meaning that 5-10% with a positive test will have another disorder). Chances are that he has celiac. As you know, once people stop consuming gluten they'll stop making the auto antibodies but as your son's test shows, there is often a lag time - tests don't become negative immediately. I would guess, and this is only a guess, that his ttg IgG would have been higher if he was still eating gluten (based on his symptoms).

 

For further testing, your son should be eating gluten so the results are accurate. He could repeat his blood tests or do an endoscopic biopsy... or you could simply put him back on the gluten-free diet.

Cara in Boston Enthusiast
Cara in Boston
Posted

My son (diagnosed at age 5, he is now 8) only tested positive on the IgG tests - all his IgA tests were normal.  The doctors were confused.  One said he didn't have it (no symptoms, normal IgA) but we took him to the celiac clinic at Children's Hospital Boston and they were concerned about the IgG tests.  They did a biopsy and it was positive.

 

If his blood test is still positive after being gluten free for 6 weeks, I would take that as a STRONG indicator that he should be gluten free.  A biopsy at this late date might come back negative, but you already have the positive blood test.  At the very least, he is gluten intolerant.

 

Sometimes celiacs damage can cause people to be intolerant to dairy too.  This goes away once the gut has healed.  

jacksonsmummy Newbie
jacksonsmummy
Posted
  • Author

Thank you! I talked to the Dr, today and he said that he strongly suspects Celiac. He is sending us on Monday to Mass General for Children and we will see GI. If they do the Biopsy I want him on Gluten again before the test so we know for sure what we are dealing with. It is interesting what you said about Dairy. I have had him off Dairy as well because he is symptomatic on that too. I live in the Boston Area as well.

Cara in Boston Enthusiast
Cara in Boston
Posted

Our experience at MGH was not good.  We LOVE the hospital - all our primary care doctors are from there, I delivered my second child there, etc.  However, after Joe's initial blood screening, we went to the pediatric GI there and got terrible service.  The doctor (Katz?) was condescending when I questioned his diagnosis (or non-diagnosis) "You've read too many magazine articles . .. "  "Don't go messing with his diet, it can be dangerous . . ."   He said Joe didn't have it because he didn't "look ill" and his genetic test indicated he had a "low" possibility of having celiac disease.  He just left it at that.  Didn't try to figure out why he was out of range on all his IgG tests.  By then I had read all about the different ways celiac could present and that the genetic test really isn't that helpful (you don't need the common genes - anyone can develop it).  Also, I had a positive blood test by then too, so I knew something was up.    We had the opposite experience at Children's.  Our doctor there (Weir) is a Celiac researcher, so she was up on all the latest information.  She repeated the blood tests and since he was still positive on the IgG tests, she ordered the endoscopy.  They found "extensive" damage.  They even did an endoscopy on my other child - even though he had zero symptoms and negative blood tests.  He has always had discolored teeth and that was enough.

 

In any case, This was more than two years ago.   I just read an article about MGH opening a brand new celiac clinic, so maybe you will get a doctor who is better informed.  Make sure you know as much as possible so if you hear something wrong like I did, ("If he had celiac, he would be having diarrhea every day.") you will know the doctor doesn't really know what he is talking about.  

 

Definitely keep him eating gluten until after the test.  Remember, if the test is negative, it only means that damage was not FOUND, not that it isn't there.  Do not take a negative biopsy to mean he doesn't have celiac.  After the test, try the diet and see for yourself.  Think of it as the final test.

 

Children's Hospital has a wonderful support group for families with kids with celiac.  You don't have to be a CHB patient to join.  The first thing they do is send you a big welcome packet full of gluten-free products and treats.  My son was THRILLED when this arrived.  His brother was jealous - which helped us transition smoothly into his "special" diet.  They have a facebook page if you want to check them out.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jacksonsmummy Newbie
jacksonsmummy
Posted
  • Author

Thank you so much for the input! I called back because when I made the GI appointment they asked if I wanted the Celiac clinic or GI. I wasn't sure which they wanted me to go to so I said GI. When I double checked after reading this the Rheumatologist said he wanted my son seen in the Celiac clinic. I changed the appointment and we will be going Thursday afternoon. The woman on the phone couldn't tell me whether or not to put him back on Gluten. The poor kids is afraid to eat it knowing how yucky he feels. I know they are not doing a biospy Thurs so I will just tell them that if they are planning to do one I want him back on gluten for at least a month or so before the test so we know exactly what we are dealing with. I was thinking back and remembered that when he was like 2 he had an ultrasound of his belly because it was so round it was out of proportion to his size. After the scan they said " nope just a little Buddah belly" Well that Buddah belly looks like some one stuck a pin in it now! I was amazed how fast his tummy flattened out! WIth in 3 weeks of the diet. Wait.... both my kids have discolored teeth!! WHat does that mean??

mushroom Proficient
mushroom
Posted

You are lucky!  The new celiac clinic MGH has opened is being run by Dr. Alessio Fasano, the renowned Dr. Fasano, the  "King" of celiac (or at least its most famous researcher)!!!  :)  He used to be in Maryland and has apparently been lured away.

jacksonsmummy Newbie
jacksonsmummy
Posted
  • Author

Really? This is new territory for us. I have always know " something"  was wrong He has had Migraines, " abdominal Migraine" with projectile vomiting, pretty wild mood swings... rashes.... I started by eliminating chemicals in the house as much as we can. We use soap nuts for laundry, chem free cleaners and soaps..... the eliminated artificial flavors and colors as well as nitrates and as many preservatives as we can. Finally in desperation I did an elimination diet and found he reacted to Gluten and milk. From there the Dr did the testing.  I so appreciate your input and kindness

jacksonsmummy Newbie
jacksonsmummy
Posted
  • Author

Dr Fasano is WONDERFUL! He was so kind and so weet with my son. He said it all looks to be celiac but because he was Gluten free for 6 weeks when they tested his blood he wants to retest in 3-4 weeks. He wants my son to have Gluten twice a day until the test and see if we can't tease out the IGA antibodies. He is already IGG positive but he said the fact that we gluten free when tested could have taken the IGA down. He said rarely there are patients not IGA deficient but that never show those antibodies so if he comes up IGG only again then the next step is a biopsy. I was afraid he would be upset with me for doing the elimination with out a Dr over seeing it but it was the opposite. He was glad I took action when the allergist wouldn't test food allergies on an 8 yr old. I am more than pleased with him and feel good that we have a plan. I am a little scared putting him back on though, he hates how it makes him feel!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748
    Eric bell
    Newest Member
    Eric bell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...