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

pidnit

Recommended Posts

pidnit Newbie

I have been dealing with pain for thirty some years.  I have been diagnosed with RA (sed rate high) due to joint inflammation and nodules, OA due to xray, mri results, fibromyalgia at one point because they didn't want to tell me it was all in my head and, I have nodules on my thyroid.  Other than my sed rate being high, my blood work comes back "normal" so, other than the Methotrexate for RA, I am on no meds for pain.  I take Ibuprofen when needed.  I do not take "pain meds" because I have a low tolerance to medication and I just cant function even if I take 800mg of Ibuprofen.  Example . .. I get a cold and take children's cold medicine.  I take 1/2 the dose of a six year old and it knocks me out.  Some days the pain is so bad, I can barely walk.  My husband bought me a hot tub a few years back for my birthday and it is my go to on bad days.   I was tested for Celiac's and came back okay.  The only other blood work that comes back out of whack are MCHC, low . . . MCH, low . . . RDW, high, . . . ESR, anywhere from 20 to 85 but normally around 40ish . . . TSH, 2.0 or below.  But, the doctors say the first three are not so far out of range that we should worry about it, the ESR just means there is inflammation and the TSH is within normal range.  I have recently gone gluten, dairy, and sugar free in an effort to combat symptoms, pain and weight.  I have noticed a difference in the inflammation and in my general overall wellbeing.  I seem to be more attentive, have more energy, and not is no much pain.  My questions are:  Does anyone else have similar issues while all blood work is coming back normal?  And, any suggestions on how to introduce items back into my diet to test for reactions?  Should I start with gluten or dairy?  The sugar I can live without.  Any info would be helpful.  I look things up on the internet but end up with a bunch of pop up ads for things that are going to cure me.  Thanks in advance.  


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Welcome!

2 hours ago, pidnit said:

My questions are:  Does anyone else have similar issues while all blood work is coming back normal? 

YES! Some of us who have problems with gluten do not test positive to celiac tests. There is a term for this, non celiac gluten sensitive NCGS and this could explain your symptoms. Having said that, it would be a good idea if you hunted down the actual results of your celiac tests and posted them here. It's possible that your doctors didn't perform the full range of tests and some celiacs only test positive to one of these. 

2 hours ago, pidnit said:

And, any suggestions on how to introduce items back into my diet to test for reactions? 

I would first double check on the tests, but once that's resolved you could keep a food diary, a very simple not of what you eat, when you eat it and how you feel. You then introduce a new food perhaps one week at a time and monitor the results.

2 hours ago, pidnit said:

Should I start with gluten or dairy?

I would start with dairy but I don't know that there's a right or wrong answer.

Best of luck. I think regardless of testing you've probably found an answer and that you will probably want to stay gluten free.  Either way you've found a good site and you will have lots of support if you need it :)

Good luck.

Matt

Gemini Experienced

I could be wrong but Methotrexate is an immune suppressant so it may affect Celiac testing. I have seen this mistake made with other people with RA.

It may be that the only way you will know if it will help is to continue eating gluten free for awhile and see how well it does with the pain levels you have.  Or...have the biopsy.  But, again, will the medication affect that also?

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748

    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.