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

Im Needing A Bit Of Help Now


jhol

Recommended Posts

jhol Enthusiast

hi,

 

ive just had the second lot of allergy testing and they were all negative again. the nurse explained to me that the skin prick tests and the blood tests were all negative and because i dont have an allergy theres nothing they can do.

 

she was worried that id restricted my diet so much when i had no reason too and offered to refer me to a cognitive behavioral therapist !!!!! to help me reintroduce the foods id taken out of my diet  ( not sure if thats right but  i think thats what she was saying- i kinda zoned out at that point).she even asked me if i wanted to add the foods back into my diet. erm no i quite like living off rice,refried beans,hummous corn tortilla chips with the odd bit of salad and veg! and i absolutely love not being able to go out to eat with my friends and just ordering a pizza or pasta dish!

 

she also asked why id given up potatoes - when i said it was because i thought they made my joint pain worse, she said they would never associate potatoes with joint pain from an allergy point of view.

 

i just feel like going an eating anything i like and then going back to the doctors and letting them sort out the crap that happens. just dont know what to do now.


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

I didn't have food allergies either, that is good news.  Since, you don't have allergies I suggest a rotational diet.  Have all of your foods, but only every 4 days for a day.  If you are intolerant to them; that is supposed to keep you ahead of your bodies antibodies.  If you want more help with this plan you can PM me.

 

My information comes from the experience of working with a chiropractor and functional medicine nurse.  I also read the manuals that came with my lab work.

 

The rotational diet helped me.  I took a break from the foods causing problems and now am putting them back in the rotation very slowly.  It sounds like you took the break.

 

Oh, and by the way.  I associate tomatoes with joint pain.

 

Are you on an enzyme supplement?  This became a vital part of my treatment plan.

 

Best of wellness to you,

 

Diana

shadowicewolf Proficient

Allergies are not the same as intolerances and there is no tests, outside of a removal from diet, for intolerances either.

Juliebove Rising Star

Not all food problems are allergies.  The nightshades (potatoes) and wheat can cause joint pain.  But they are not allergies.  I do not have any food allergies.  But I do have OAS to a couple of things.  What I do have are food intolerances.  It is not true that there are no tests for these things.  There are tests but they are controversial.  One is a blood test, one is a hair test and another is muscle memory.  I am not so sure on the muscle memory one but some people claim that it works.  It can be difficult to find anyone to test you for these things and you do need to be retested about every 3 years.  Food intolerances can change.  Can, but might not.  I don't think I'll ever be able to eat eggs again.

cyclinglady Grand Master

Not all food problems are allergies.  The nightshades (potatoes) and wheat can cause joint pain.  But they are not allergies.  I do not have any food allergies.  But I do have OAS to a couple of things.  What I do have are food intolerances.  It is not true that there are no tests for these things.  There are tests but they are controversial.  One is a blood test, one is a hair test and another is muscle memory.  I am not so sure on the muscle memory one but some people claim that it works.  It can be difficult to find anyone to test you for these things and you do need to be retested about every 3 years.  Food intolerances can change.  Can, but might not.  I don't think I'll ever be able to eat eggs again.

Don't give up hope!  After staying away (completely for one year) from eggs, I'm able to use them in baked goods.  I still can't eat them in their "whole" form.  

jhol Enthusiast

I didn't have food allergies either, that is good news.  Since, you don't have allergies I suggest a rotational diet.  Have all of your foods, but only every 4 days for a day.  If you are intolerant to them; that is supposed to keep you ahead of your bodies antibodies.  If you want more help with this plan you can PM me.

 

My information comes from the experience of working with a chiropractor and functional medicine nurse.  I also read the manuals that came with my lab work.

 

The rotational diet helped me.  I took a break from the foods causing problems and now am putting them back in the rotation very slowly.  It sounds like you took the break.

 

Oh, and by the way.  I associate tomatoes with joint pain.

 

Are you on an enzyme supplement?  This became a vital part of my treatment plan.

 

Best of wellness to you,

 

Diana

 

hi , thanks for answering

 

are you saying i should only eat one food per day, so i would eat rice one day, kidney beans the next ect. or keep eating the foods i know are ok and add an extra one like broccoli and see how it goes.

soz if i sound like an idiot- im a bit stressed out  coz im basically on my own now. i feel like im back to square one. ive eaten potatoes for a few days (just to prove a point) joint pain not back yet but the rash on my hands has really hardened up and gone dry and flakey.

im not taking any supplements at the moment cos i was hoping to be diagnosed with something. but i probably could do with something now- i dont think my digestion is working too well. 

Juliebove Rising Star

Don't give up hope!  After staying away (completely for one year) from eggs, I'm able to use them in baked goods.  I still can't eat them in their "whole" form.  

I am not even tempted to try eggs ever again in any form.  They make me sooo ill and gave me such stomach pain for such a very long time, this is not something that I ever want again.  Thankfully I never liked eggs very much to begin with.  I have been tested three times and every test showed eggs as being very high. 


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



Celiac.com Sponsor (A8-M):



jhol Enthusiast

I am not even tempted to try eggs ever again in any form.  They make me sooo ill and gave me such stomach pain for such a very long time, this is not something that I ever want again.  Thankfully I never liked eggs very much to begin with.  I have been tested three times and every test showed eggs as being very high. 

hi,

before my doc suggested celiac, out of desperation i ordered one of these hair analysis tests off the internet. i wasnt expecting much to be honest, i just wanted an answer to , well , anything really. when the results came back all i could do was look every item up on the internet and see if there were any similarities. the only thing ive come up with is, many of the food items are high in histamines or are histamine releasing. ive read on here that you should avoid wheat/gluten anyway if you do have a problem with histamines.( im not diagnosed celiac) i think ive been looking at too many things and not getting anywhere.while sorting out today i found an old elimination diet book - so ive obviously gone down this same route at some point in my life. im gonna try that now and get some proper answers. im not a big lover of eggs either- make me feel sickly

Juliebove Rising Star

hi,

before my doc suggested celiac, out of desperation i ordered one of these hair analysis tests off the internet. i wasnt expecting much to be honest, i just wanted an answer to , well , anything really. when the results came back all i could do was look every item up on the internet and see if there were any similarities. the only thing ive come up with is, many of the food items are high in histamines or are histamine releasing. ive read on here that you should avoid wheat/gluten anyway if you do have a problem with histamines.( im not diagnosed celiac) i think ive been looking at too many things and not getting anywhere.while sorting out today i found an old elimination diet book - so ive obviously gone down this same route at some point in my life. im gonna try that now and get some proper answers. im not a big lover of eggs either- make me feel sickly

 

I guess I am lucky because gluten doesn't seem to be a problem for me.  It was for daughter and that's why I came here.  When she first went gluten-free, I made our entire house gluten-free, including replacing the toaster.  But that didn't sit so well with my husband because he loves pizza and sandwiches.  I did make good gluten-free pizza but since daughter couldn't have cheese either, that didn't work so well.  Plus she really hates pizza.  So I would purchase sandwiches and pizzas for him on occasion.  And anything else he wanted, he could get in a restuarant.  He never complained about the gluten-free pasta.  He's Italian.  And we ate a lot of pasta for a while!

 

I was eventually tested myself and found out about the eggs, dairy and almonds.  Later testing revealed that I was no longer intolerant to dairy but the Dr. warned me not to eat it.  Eventually I caved and began eating it, reasoning that if daughter could eat it and not get sick, I could too.  And that worked  for a while but then I went into denial big time.  But that only lasted for a few weeks.  After realizing that the nachos I ate in the Target snack bar would send me flying to the bathroom before I finished my shopping trip, I gave up the dairy.  And felt a lot better!

 

At some point I began eating gluten again.  Not a lot of it.  And because I can't have dairy or egg, most gluten type foods in restaurants are off limits.  I generally do not know what is in their bread and often they don't either.  I also found out that I can not have rye or oats which would explain why I got horrible stomach pains when eating breads containing those.  And it is kind of hard to find any bread that has no dairy.  But it didn't make me sick.  Neither did Cinnamon Toast Crunch or the vegan pie that I buy occasionally at PCC.  But other than the toast that I eat almost daily, I generally don't eat much gluten.  Daughter can have it *knock wood* again too but...  Because I know it was a problem for her before, I try not to make much that contains it.  Pasta maybe once a week.  Once in a while she will have toast or crackers.  She was big into bagels for a while.  But no longer.  Mostly for dinners I try to do rice, sweet potatoes, beans or potatoes for the starch.  Although she is supposed to be on South Beach so not supposed to have potatoes.

 

Note to anyone reading this, that the problem my daughter had with gluten and wheat was an intolerance.  Not celiac.  So not the same but when she was having issues she did get quite sick.  Don't want to lead any celiac into thinking that they could one day eat gluten again.  Unless the medical people come up with some kind of miracle.

 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

    5. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      23

      Headaches / Migraines and Hypoglycaemia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,149
    • Most Online (within 30 mins)
      7,748

    dvyoung
    Newest Member
    dvyoung
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
    • knitty kitty
      Some people have difficulty processing tyrosine.  Cut out the nuts and cheese and see if there's any difference.  Everyone is different. This study shows that tyrosine can affect our brain with detrimental effects as we age. Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6084775/ "In conclusion, we show age-related effects of tyrosine administration especially on proactive, not reactive, response inhibition, accompanied by signal changes in dopamine-rich fronto-striatal brain regions. Specifically, we observed that tyrosine’s effect on brain and cognition became detrimental with increasing age, questioning the cognitive enhancing potential of tyrosine in healthy aging."
×
×
  • 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.