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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.