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

Update on testing

Jctb

Recommended Posts

Jctb Explorer
Jctb
Posted

I've posted a few different topics, so I thought I would just update in one post. I am seeing my GP later today, but apparently my biopsy results were negative. I have no further information on this. What I do know, is that I have been feeling much worse since giving up gluten after my gluten challenge. Half the days I have barely left the couch. I am so confused and upset. They had warned me this may not give me answers...I'm barely eating anything, I feel so sick. I feel like I felt better eating bread, so maybe that's how I'm supposed to be eating? At this point I just need to eat more than a banana, which is all I can stomach today.

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

Celiac.com Sponsor (A8-M):


plumbago Experienced
plumbago
Posted
32 minutes ago, Jctb said:

I've posted a few different topics, so I thought I would just update in one post. I am seeing my GP later today, but apparently my biopsy results were negative. I have no further information on this. What I do know, is that I have been feeling much worse since giving up gluten after my gluten challenge. Half the days I have barely left the couch. I am so confused and upset. They had warned me this may not give me answers...I'm barely eating anything, I feel so sick. I feel like I felt better eating bread, so maybe that's how I'm supposed to be eating? At this point I just need to eat more than a banana, which is all I can stomach today.

I looked at your past posts, but I’m not sure i know what you were eating then and what you’ve stopped eating now. Also what sort of medical workups you’ve had and what were the results. I understand your biopsy was negative - but I also saw on one post that you were worried they only took one biopsy. Do you have the analyst’s result report there with you? Does it say how many were taken? It’s hard for me to hazard any kind of a guess without a little bit more information, including any medications you are taking. I’m sorry you are feeling so awful. What symptoms are you having?

Plumbago

cyclinglady Grand Master
cyclinglady
Posted

I am confused too.  I appears that your blood panel was indeterminate, but that your NP had you on a grain free diet for five weeks prior.  You went back on gluten for two weeks (recommendation is 2 to 4) for the endoscopy.  Maybe it was not enough time for your antibodies to build up and start attacking your small intestine.   Doctors can not say for sure that two weeks is enough.  Probably for most, but maybe not all.  I say this because I never even test positively on the TTG and EMA EVER (but my biopsies proved otherwise and my anemia resolved forever on the gluten free diet).  The number of biopsies taken (6 or more recommended) and the location should be determined.  I would ask for all medical and lab reports.  

 I think a second GI consult might be prudent.  

Your symptoms?  If you have celiac disease it can take a few MONTHS to feel better.  Why?  Most often mistakes are made in the diet.  It happens.  There is a steep learning curve.  It flat out just takes time to heal.  I think most members will tell you that healing does not happen that fast even though science tells us that villi regenerates in just a few days.   There is usually a lot of collateral damage.

Finally, something is wrong.  Maybe it is NOT celiac disease.  I though for sure my niece had it, but Crohn's was found instead on a pill camera.  She had consulted with four GIs!!!!  Maybe it is NCGI which is determined after celiac disease has been ruled out.  Then a gluten-free diet is in order to resolve the NCGI (Non celiac gluten intolerance or whatever they are calling it now.  

So, keep advocating for your health.

Jctb Explorer
Jctb
Posted
  • Author

Thanks to both of you. Ok, so I was feeling not great and went grain free for 5 weeks. Then slowly started to introduce grains. All seemed ok, then I had an issue after 3 weeks, with blood in my stool. Celiac wasn't on my radar. In fact, rice and oats are what seem to bother me most. But the Dr added on the celiac test and it was indeterminate. So I was sent for endoscopy and colonoscopy. I consumed gluten for just over two weeks, then went back to my grain free, dairy free diet.

I saw my Dr this am and she said my bowels were healthy, that the Dr had taken 'several' samples and that all is well on both ends.  (No celiac, but also not H Pylori, crohn's, etc). She is running all kinds of other bloodwork, because I am still feeling terrible, and obviously the assumption I had made was that it was celiac. I'm going to stay off gluten for now, in hopes that I'll start to feel better. My GI symptoms are worse this week than they have been in ages...so something is up, but apparently I'm healthy??!

I am pretty sure my Dr. would not refer me to another GI. She's not the best, but it's very hard to find another Dr. here, especially if you already have a Dr. (Canada) I am going to ask her for a copy of the report though, as well as the rest of the bloodwork she's sending me for. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • 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    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.