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

So Frusterated! Still No Answers!

mommyetb

Recommended Posts

mommyetb Apprentice
mommyetb
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

How old is your son? Tests can be unreliable under the age of 2. Actually the tests can be unreliable at any age but particularly under 2. If he is improving on the diet he obviously is intolerant to gluten. He may not have Celiac but an intolerance can cause the same symptoms and treatment is the same whether he's Celiac or intolerant. Going ahead with the biopsy is a personal decision but he should not be started on the diet if you plan on further testing.

Guest nini
Guest nini
Posted

your best answer is the fact that he has responded positively to the diet. The tests are extremely unreliable, especially in children. My daughter's bloodwork was inconclusive (but only because they did not do the correct tests) She did NOT have a biopsy and never will, but she most certainly IS gluten intolerant. She reacts violently and immediately to gluten and is such a different, healthy child without it.

I would suggest keeping him gluten free, do not worry about further testing. Accept that he is simply gluten intolerant and be thankful it was discovered before it became full blown celiac.

You absolutely belong here. Don't give up. Trust your instincts. You know that gluten is the problem, what more do you need to know? If he did have a biopsy and IF it confirmed damage (highly unlikely at this point if he's been gluten-free) the treatment would still be the same, a strict adherance to the gluten free diet and that diet will heal any existing damage.

Guest greengirl
Guest greengirl
Posted

I understand your frustration! I went gluten free despite negative bloodwork and negative biopsy (although

they did find intestinal ulcerations and inflammation, just not the typical flattened villi of Celiac). I have been through many other tests including camera capsule endoscopy, small bowel barium test, and small bowel enterocyclis (really nasty, nasty test!!). Nothing was conclusive, until I ordered the gluten sensitivity stool and gene panel from Enterolab. My Iga was elevated, indicating a gluten sensitivity and I found out that I have 2 copies of the gluten sensitive/celiac gene, one from each of my parents. This was the validation I needed, despite the miraculous results of the gluten free diet. I am disappointed that my doctor was not able to give me any answers after all the tests I did, but I think this is pretty typical in a lot of cases.

It sounds like your son is much better on the gluten free diet, so stick with it!! It takes time for the intestine to heal, so a biopsy could still show damage, but if he is gluten sensitive and not Celiac you won't get a confirmation from the biopsy (although gluten sensitivity can do serious damage, as well). And even if he is celiac, some doctors won't diagnose it unless the villi is completely flattened. You don't want to wait until the damage is that severe for a diagnosis! Maybe check out Enterolab's website (www.enterolab.com). It is a non-invasive stool test and it can still detect gluten sensitivity and celiac even after a gluten free diet has been started (up to 24 months, I think.)

Good luck!

Christine

aikiducky Apprentice
aikiducky
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative!

Doesn't the low IGA mean that he's IGA deficient, or am I confusing things? It would mean that your son's blood tests for celiac will always be negative, even if his intestines were completely eaten away, because he simply doesn't produce the antibodies that they are looking for.

If he feels better gluten free, I hope you will keep him gluten free!

Pauliina

ravenwoodglass Mentor
ravenwoodglass
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:

For me the repeated neg blood tests caused years of disability and pain. Trust the dietary results the blood tests for many of us are worthless. If he is doing better keep him gluten-free and if you really need something on paper maybe Enterolab gene testing might be the way to go.

chrissy Collaborator
chrissy
Posted

your son is IgA deficient, so he needs to have a completely different testing done to know if he really has celiac. IgA deficiency is something that can go along with celiac, in fact, celiac can actually cause IgA deficiency. someone with celiac is 10x more likely to be IgA dficient than the rest of the population. one of my boys is IgA deficient. our ped gi had blood work done through promethius lab in california to do gene testing and some other fancy testing to see if he has celiac. i am just waiting for the doc to call me with the results.

christine

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

Celiac.com Sponsor (A8-M):


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.