Jump to content

  • 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

3 Year Old Negative Blood Tests, Positive Enterolab: Need Advice

arlingtonmom

Recommended Posts

arlingtonmom Rookie
arlingtonmom
Posted

I'm new to the board, and looking for some advice. My three year old son is being seen by a ped endo because he has fallen off his growth curve. He also has loose stools (not diarrhea) and sometimes complains of stomach aches. As part of his screening the endo ordered the celiac blood panel. He has the DQ2 gene, but his other blood tests for antibodies were negative. The endo said we could dismiss celiac as the cause for his growth problems, but I wasn't satisfied. I ordered the Enterolab test, and his results came back that he was gluten sensitive, but was not yet having an autoimmune reaction. They advise that he be put on a permanent gluten free diet, and expect that if he continues to eat gluten he will have an autoimmune reaction

I'm not sure what to do now. I've made an appointment with a ped GI at Georgetown, but what if she wants to scope him and he's gluten intolerant but not Celiac. Won't his scope come back negative. Can they tell anything regarding non-celiac gluten intolerance from a biopsy. I know I have the option of going gluten free, but I'm concerned that it will be difficult to tell the effect because growth catch up may take a while to monitor, and he's only three so I don't know if he'll be able to accurately communicate how he feels. For some reason I feel the need to have a definitive diagnosis before making a life altering decision on his behalf. I'm already being treated like I'm paranoid by some family members.

Anyway, if anyone can give some guidance on whether a biopsy can show anything if he is non-celiac gluten intolerant, and how growth was effected once your child went gluten free I'd really appreciate it. If anyone can offer general guidance or guidance regarding Enterolab I'd also appreciate that input. Or, if anyone has experience regarding negative blood tests in young children I'd love to hear it.

Thank you.

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

Celiac.com Sponsor (A8-M):


snomnky Apprentice
snomnky
Posted

My son at 1yr tested negative for the antibody and positive for only one gene marker. He continued to have symptoms and after a horrible reaction we decided to do an immediate biopsy (his ped GI was concerned as well and admitted us for the biopsy) they did find severe gastritis and bleeding, severe damage to his small intestine diagnosed as Celiac, and damage to his colon presumably from other food allergies. He has been gluten free since then with no problems. I have done a ton of research and came to my own conclusion that the blood tests just aren't accurate at such a young age and the only real test is going gluten-free and seeing a change. My son is two next week and although he is short, he is plenty heavy and is growing well (we also saw a big drop on his growth chart at 1yr, he actually was loosing a lb a week) I too just wanted to know what was wrong with my boy, that is why we agreed to the biopsies (he also went through another full day of testing, x-rays, and later two days of allergy testing and food challenges) My family thought i was just paranoid too, especially my husband.

I hope that helps a little. I know how tough it is.

sadiesmom Rookie
sadiesmom
Posted

I wish I had an answer for you - because it would mean I had an answer for myself. I am in a very similar situation with my 2 1/2 year old daughter. We went to a Ped GI when she was 22 months because of the lose stools and the low weight gain. (She was only about 20 pounds at 2 years old. The blood panel was negative except the hereditary marker which was positive. We even did the biopsy. It was not as bad as i had imagined - but I understand not wanting to do it! That was negative. Her Ped GI told me it was okay to try the gluten-free diet. I never did it well - we avoided most gluten - but I was way too lax and I am sure she got some gluten every day. In spite of that. She started gaining about 1 pound a month. When we just had her checkup I confessed to the doctor that I never did gluten free - but probably more gluten light. He said that it was not the diet then that made the difference and that he was pretty sure it wasn't celiac or a tiny bit of gluten would have made a difference.

At any rate - that is where we stand now. I too am afraid of committing to a diet that she doesn't need. And I really hate myself for not just sticking steady to the diet. But I really wanted a positive diagnosis before the diet - and it doesn't look like that is going to happen.

I don't really understand gluten intolerance vs celiac. My only understanding is that you treatit the same way with a gluten-free diet.

Anyway - I am sorry to not have anwers for you - I just wanted you to know that we were in similar situations and that I understand how difficult it is to manuveur throught all this gray area.

Amy

arlingtonmom Rookie
arlingtonmom
Posted
  • Author

Sadiesmom and Snomnky,

Thank you so much for your thoughtful responses. It does make me feel better to now I'm not alone. Good luck with your children.

janelyb Enthusiast
janelyb
Posted

In my humble opinion, if he has the gene that means he could one day develop celiac so why not just go ahead and put him of the gluten-free deit now. And if he is already showing the early signs of celiac it is possible the damage might already be happening but just not bad yet...just imagine where it could be 5 yrs from now....

So I would use that test as a baseline and limit or completely cut out gluten. Remember if he has one gene he got it from either mom or dad.....So mom and dad might wanna get some tests done as well.

Eriella Explorer
Eriella
Posted

I agree with Janely, get tested yourself and then consider going gluten free hardcore and seeing where you are 6 months from now. If there is no improvement, do a gluten challenge (yay for real pizza!!) and see if it is the gluten. Worst case is that you spent 6 months trying a diet unnecessarily, best case is your son feels so much better.

My experience is that I am gluten sensitive and most likely have been since I was born (I had problems with the formula and never had a normal bowel movement (nor knew what was "normal" to try to fix it)). All of my antibody tests come back negative and I have not had an endoscopy because it would not change my prognosis. Even if you son is "just" gluten sensitive/intolerant and doesn't have celiacs does not mean he should be eating gluten. If he feels better, looks better, and gains weight by eating gluten free, by all means try it.

As far as an endoscopy goes, I believe it would only show if it is celiacs. There are benefits to knowing whether it is celiac or non-celiac gluten intolerance, but in the end it really doesn't make a difference. The treatment is the same and the reactions can be just as severe. What I would do is try the diet, then if you see positive results and need to know which version he has, get tested a few months from now. There will still be damage.

Good luck!

arlingtonmom Rookie
arlingtonmom
Posted
  • Author

Thanks so much for everyone's help. I just went for my own blood tests yesterday, so we'll see what they say. We're going to see a ped GI in a couple weeks, and I'll discuss our options with her. But, I think our plan will be to try the diet for six months, as you've suggested, and see how it goes. What a great resource. Thanks again.

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

Celiac.com Sponsor (A8-M):


Nic Collaborator
Nic
Posted

Hi, I just wanted to mention that my son tested a high positive through the blood work and the doctor was concidering the biopsy to be a confirmation but when he got the results, they were negative. Because there was such a contradiction between the blood and biopsy, the doctor had more blood drawn and sent that to Prometheus labs in California and the biopsy to Columbia University in NYC. Prometheus confirmed that his blood was consistant with Celiac and he was carrying the DQ2 gene and Columbia confirmed villi damage consistant with Celiac. I don't know what was the problem with the first lab that tested the biopsy. My point is that these tests seem to be crazy as far as reliability and if a person responds positively to the diet, whether they be Celiac or gluten intolerant, then gluten free is what they should be.

Nicole

NoGluGirl Contributor
NoGluGirl
Posted
I'm new to the board, and looking for some advice. My three year old son is being seen by a ped endo because he has fallen off his growth curve. He also has loose stools (not diarrhea) and sometimes complains of stomach aches. As part of his screening the endo ordered the celiac blood panel. He has the DQ2 gene, but his other blood tests for antibodies were negative. The endo said we could dismiss celiac as the cause for his growth problems, but I wasn't satisfied. I ordered the Enterolab test, and his results came back that he was gluten sensitive, but was not yet having an autoimmune reaction. They advise that he be put on a permanent gluten free diet, and expect that if he continues to eat gluten he will have an autoimmune reaction

I'm not sure what to do now. I've made an appointment with a ped GI at Georgetown, but what if she wants to scope him and he's gluten intolerant but not Celiac. Won't his scope come back negative. Can they tell anything regarding non-celiac gluten intolerance from a biopsy. I know I have the option of going gluten free, but I'm concerned that it will be difficult to tell the effect because growth catch up may take a while to monitor, and he's only three so I don't know if he'll be able to accurately communicate how he feels. For some reason I feel the need to have a definitive diagnosis before making a life altering decision on his behalf. I'm already being treated like I'm paranoid by some family members.

Anyway, if anyone can give some guidance on whether a biopsy can show anything if he is non-celiac gluten intolerant, and how growth was effected once your child went gluten free I'd really appreciate it. If anyone can offer general guidance or guidance regarding Enterolab I'd also appreciate that input. Or, if anyone has experience regarding negative blood tests in young children I'd love to hear it.

Thank you.

Dear arlingtonmom,

I tested seronegative, but am Celiac. Some more recent reports have found that those who test seronegative actually have those most severe cases of Celiac. I think you were very wise to do the lab tests. The gluten-free diet is good to be on! I had digestive issues from birth. It got worse and worse as I got older. Now, at 24, I finally know why.

My doctor says she has had a handful of patients with negative serology who were Celiac. All of my ailments are typical with it. I lost my gallbladder at 20. That is very uncommon. Ovarian cysts are another problem I have had. The stomach problems became so severe, I did not know what to do. The nausea was unbearable, the reflux ended up being so bad I ended up having to sleep practically sitting straight up despite being on Prilosec twice a day, and the colon problems were awful. I used to belch so loud and forcefully it was embarrassing.

My holistic physician said that those blood tests are not that accurate. I agree. I always had a feeling they were wrong.

They were done several years ago. What is really scary is how many G.I. docs do not know anything about it! You would not believe how many told me there was no way I had Celiac before. These idiots think they are God in a labcoat!

I would not put your child through the testing if it is not necessary. That is hard on your body. I think doing the diet is your best bet. The biopsy is not always positive either, especially if you are going gluten-free already. You must consume gluten for a while before the test in order for it to be accurate.

Sincerely,

NoGluGirl

P.S. I am PMing you with a great beginner's list to help you out!

arlingtonmom Rookie
arlingtonmom
Posted
  • Author

No Glu Girl,

Thanks for the list. It was really helpful.

NoGluGirl Contributor
NoGluGirl
Posted
No Glu Girl,

Thanks for the list. It was really helpful.

Dear arlingtonmom,

You are very welcome! Anything to make it easier! This is not the world's most convenient diet! There are so many things that are unsafe. Luckily, due to calling manufacturers and hunting lists, and talking to other members, I have found out those foods were okay.

Sincerely,

NoGluGirl

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.