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

Positive Biopsy, Negative Blood Tests

ToHelpMySon

Recommended Posts

ToHelpMySon Newbie
ToHelpMySon
Posted

This is my first time here and I am desperately seeking some help and advice. My son is 16 months old and he has had severe acid reflux since birth and has been seen by Denver Children's Hospital since that time. At the age of 12 months he had a 2nd UGI, which showed continued reflux and because his Pediatrician felt he should have outgrown it they decided to do an upper endocscopy, which happened at about 15 months of age. They discovered a very nodular duodenum and took a biopsy, which came back as POSITIVE for Celiac Disease, surprising not only them but me too. They said Celiac could be the reason he is still refluxing.

Well, he had blood work done 4 weeks ago and it came back NEGATIVE for Celiac Disease and the GI is saying they need to consult their "Celiac Guru" @ Children's to decide the next step. I have been talking to some helpful moms on Infant Reflux Disease Dot Com and they have told me that the biopsy is the gold standard for Celiac testing and that they believe he has Celiac 100% and should go on a gluten-free diet regardless of what the doctors say. I happen to agree and want to see if anyone here agrees.

My son has always cried a lot, been very fussy, grouchy, very tired, with dark bags under his eyes ALL THE TIME!! He has never had a growth problem but has occasional boughts of diarrhea but no constipation. I have also been sick most of the time since my late teens with so many various sypmtoms that the doctors have never been able to figure out what is wrong with me. I am fatigued all the time, ill-feeling, achy, and I have panic attacks as well. I think I might have Celiac Disease and my son may have got it from me. Unfortunately, I do not have insurance so I can't even see a doctor or be tested for it.

I am considering joining my son in a gluten-free diet so make the whole process a bit easier. After reading this whole book I wrote what are your thoughts? Any advice or suggestions for us?

Thank you!

Melissa, Mommy of Samuel

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome to the board.

False negatives on the blood tests are common, especially in young children. False positives on the pathological examination of the small intestine biopsy are are extremely rare.

I am not a doctor, but it is my interpretation that your son does indeed have celiac disease, and needs to go on a gluten-free diet now and forever.

Edit: Yes, you should also be tested, as should any other first degree relatives of your son (father and any siblings).

ToHelpMySon Newbie
ToHelpMySon
Posted
  • Author

Welcome to the board.

False negatives on the blood tests are common, especially in young children. False positives on the pathological examination of the small intestine biopsy are are extremely rare.

I am not a doctor, but it is my interpretation that your son does indeed have celiac disease, and needs to go on a gluten-free diet now and forever.

Edit: Yes, you should also be tested, as should any other first degree relatives of your son (father and any siblings).

Peter,

Thank you for responding, I appreciate it! Is there a particular reason that blood tests on young children are so inaccurate?

I am going to start my son on a gluten-free diet ASAP, as overwhelming as it seems I do think the end results will be well worth it.

I don't have insurance nor the money for myself to be tested so I think I will just join my son on the diet and see if it helps me as well. Do you think thid id a wise thing to do?

I hope his reflux stops once gluten is eliminated from his diet, then we can take him off his Prevacid and hopefully his constant hiccups and choking episodes will stop as well. Perhaps he'll also feel better and therefore have a much more energy and be happier.

Melissa

lizajane Rookie
lizajane
Posted

YES i think you should try gluten free for you both. as long as you are willing to accept the response to the diet as evidence that you and your child do or do not need to live gluten free, then you really don't have to be tested. your symptoms sound a LOT like mine. and i am 100% different now that i am gluten free. it is THE BEST THING that has ever happened to my health. i had a biopsy, but my son did not and i still feed him gluten free based solely on his response to the gluten free diet. (we both had negative blood tests. i just didn't want to do a biopsy with him at age 4)

dilettantesteph Collaborator
dilettantesteph
Posted

My son was diagnosed at age 10. He was having bad reflux. He was throwing up 10 times a day and having bad chest pain from the reflux. It went away quite fast when he stopped eating gluten. I hope that encourages you.

ToHelpMySon Newbie
ToHelpMySon
Posted
  • Author

lizajane - Thanks for the encouragement! It is hard w/o insaurance because I want to have the test done but that is just not a possibility and I don't know when it will be. I don't want to wait for my insurance, I want to feel better now. I know what you mean about the biopsy for your son, it was very hard to watch my baby go through that but I am glad we did it in the end. I have been as gluten-free as i am aware of for 7 days now and I am feeling better and my sons reflux is improving.

dilettantesteph - I am glad to hear your son is doing much better! Did he suffer from reflux as an infant and toddler too? I know my son is in pain he just can't tell me where the pain is and that breaks my heart. He is very fussy and irritable all the time, rarely happy.

dilettantesteph Collaborator
dilettantesteph
Posted

As a baby my son was very fussy. It seemed like colic. I wish that I had known about celiac then. He spit up a lot, but I didn't know what it was. He also had problems with #2 leaking out of the diaper making a huge mess. I didn't know what that was either. He was always very skinny and irritable. He had problems at school remembering things and with organization. The symptoms gradually worsened until he got to the throwing up 10 times a day when he was diagnosed. That was when a virus seemed to suddenly increase his symptoms much more. As long as he stays out of gluten he is a changed boy. School is going much better too. You are doing a really good job to get your child diagnosed so early. I wish I had.

We had lousy insurance at the time of diagnosis. That certainly can complicate things. I got diagnosed at the same time and it was such a wonderful thing. I had no idea how sick I had been until I got better.

We had a lot of ups and downs while we figured out the diet. Hang in there, you will get through it.

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

Celiac.com Sponsor (A8-M):


glutenfreemommy Newbie
glutenfreemommy
Posted

My daughter was ill for for a couple of months and finally had to be put on a feeding tube because of severe weight loss, diarrhea, vomiting and lethargy. She struggled on the feeding tube and after doing endless tests (because EVERYTHING came back negative including two tTg screens)we finally pushed hard for the scope which was done and showed Celiacs...something the DR.'s had ruled out because of negative tTg results. Her recovery has be astounding since going gluten free! You will notice a miraculous change in your son I am sure if you adhere to a strict gluten free diet. Also get yourself and your family checked...since then my husband and son have been diagnosed as well. Good luck...this will turn out to be a blessing!

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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,548
    • Most Online (within 30 mins)
      7,748
    KandiWoods
    Newest Member
    KandiWoods
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.