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

Can I Have Celiac With A Negative Biopsy And A Positive Elisa Panel

Guest Talia

By Guest Talia
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest Talia
Guest Talia
Posted

Hi Everyone,

I am sure i have Celiac, i have every symtom, and was sickly as a child. I am 55 now, and just had a endoscopy with 10 biopsies. all negative. I was gluten free for 3 months, but ate gluten for 2 weeks for the test. My ELISA panel was very high for wheat and gluten, Iam IGA deficient so I can't use that as an indicator. Would someone please help me figure this out.

Can celiac exist with what the doctor calls the gold standard of diagnosis of negative biopsy?

B)

i have fibro, pain disorder, thyroid disease,osteperosis, osteoarthritis, depression, periodontal disease, psoriosis, headaches, IBS, fatique, muscle weakness, family hx of sjogrens disease,

I would like one doctor to put the pioece4s together for me. what kind?

Thank you for your web site it is very helpful.. i have already learned a lot by reading other post.

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Talia, and welcome to these boards.

With being gluten-free for three months, and only being back on gluten for two weeks, you were pretty much guaranteed a negative biopsy, despite probably having celiac disease. All your symptoms point towards celiac disease. With an IGA deficiency you would obviously have negative blood work results, too.

Your ELISA panel combined with a positive dietary response really is all the diagnosis you need to permanently stay away from gluten!

Unfortunately, there is no guarantee that ANY kind of doctor will know enough about celiac disease to 'put the pieces together', as most of them are woefully ignorant when it comes to celiac disease, including gastroenterologists (even though they are supposed to be the celiac disease specialists).

Personally, I think you have already put the pieces together yourself and don't need a doctor to tell you what to do. Even though you may need an endocrinologist to test for thyroid and adrenal problems.

I hope you feel better soon.

Guest Talia
Guest Talia
Posted
Hi Talia, and welcome to these boards.

With being gluten-free for three months, and only being back on gluten for two weeks, you were pretty much guaranteed a negative biopsy, despite probably having celiac disease. All your symptoms point towards celiac disease. With an IGA deficiency you would obviously have negative blood work results, too.

Your ELISA panel combined with a positive dietary response really is all the diagnosis you need to permanently stay away from gluten!

Unfortunately, there is no guarantee that ANY kind of doctor will know enough about celiac disease to 'put the pieces together', as most of them are woefully ignorant when it comes to celiac disease, including gastroenterologists (even though they are supposed to be the celiac disease specialists).

Personally, I think you have already put the pieces together yourself and don't need a doctor to tell you what to do. Even though you may need an endocrinologist to test for thyroid and adrenal problems.

I hope you feel better soon.

Guest Talia
Guest Talia
Posted
Hi Talia, and welcome to these boards.

With being gluten-free for three months, and only being back on gluten for two weeks, you were pretty much guaranteed a negative biopsy, despite probably having celiac disease. All your symptoms point towards celiac disease. With an IGA deficiency you would obviously have negative blood work results, too.

Your ELISA panel combined with a positive dietary response really is all the diagnosis you need to permanently stay away from gluten!

Unfortunately, there is no guarantee that ANY kind of doctor will know enough about celiac disease to 'put the pieces together', as most of them are woefully ignorant when it comes to celiac disease, including gastroenterologists (even though they are supposed to be the celiac disease specialists).

Personally, I think you have already put the pieces together yourself and don't need a doctor to tell you what to do. Even though you may need an endocrinologist to test for thyroid and adrenal problems.

I hope you feel better soon.

Guest Talia
Guest Talia
Posted

thank you, for responding, being new the boards, I didn't even realize it until today.

It does fit together in a profile of celiac... especially the stuff as a child.

I didn't realize docs were so ignorant... it was like when my mom was dx with sjogrens disease.

I have always thought that fibromyalgia and IBS were words used when a real dx could

t be made. Hopefully with a change in diet and working with a nutritionist, I can turn my life around.

Everything is an effort.. I pray with the help of this board, and all the knowledgeable people I will one day have a life again.

B)

JerryK Community Regular
JerryK
Posted

I think the answer to your question is: Celiac is a term used for just one of the manifestations of a rather large spectrum of gluten sensitivity. Celiac being specific intestinal damage. It

Guest Talia
Guest Talia
Posted
I think the answer to your question is: Celiac is a term used for just one of the manifestations of a rather large spectrum of gluten sensitivity. Celiac being specific intestinal damage. It
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest Talia
Guest Talia
Posted
I think the answer to your question is: Celiac is a term used for just one of the manifestations of a rather large spectrum of gluten sensitivity. Celiac being specific intestinal damage. It

Archived

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

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


  • Member Statistics

    • Total Members
      131,861
    • Most Online (within 30 mins)
      7,748
    Priscilla Buxton
    Newest Member
    Priscilla Buxton
    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.