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

Starting To Wonder If Gluten Is Even My Problem

answerseeker

Recommended Posts

answerseeker Enthusiast
answerseeker
Posted

To recap my biopsy and blood tests were negative but because I was hospitalized due to asthma and on a lot of prednisone prior to my endoscopy my GI doctor said its possible I can still have celiac and the prednisone interfered with the results.

Anyway as most of you know I've been gluten free since July 2nd. I felt great my first month but now I'm having a whole new set of symptoms.

For the last week my joints hurt to the point I can't sleep at night. My fingers are tingly and the veins in my arms are like popping out. Don't know how to describe it you can feel them and they hurt to the touch.

What the heck could be causing this?

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

A bump or twist in your gluten intolerance healing?  Have you been checked for vitamin deficiencies?  I have had many twists and bumps.  I have doubted I have celiac.  However, my caregivers believe I do, and have pointed to my improvements as proof.  The improvements haven't always been study and I have also changed or added to my treatment several times.  keep walking on the road, find out what you can to keep yourself motivated.

 

Did you say how long you have had symptoms of gluten intolerance?

 

Get Well,

 

D

seraphim Contributor
seraphim
Posted

Hang in there. There is definitely a lot of crazy stuff  that can pop up after going gluten free. You could always check into casein, nightshades, amines, salicylates...any number of things that pop up and become unmasked once gluten is taken out of the equation. And, it could be possible it's not gluten I guess but I wouldn't risk re-adding it at this point. Experiment a bit?

kareng Grand Master
kareng
Posted

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?

 

I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

dilettantesteph Collaborator
dilettantesteph
Posted

I agree that seeing a doctor sounds like a good idea.  Unfortunately you need to see a GOOD doctor.  Many of us have had problems with bad ones.  Good luck with that.  I have had similar questions many times.  There was such a huge change when I first went gluten free that I had enough evidence to continue on with the extreme elimination of gluten contamination that I had to undertake to completely eliminate symptoms for myself and my son.  It defied credibility lots of times, but it is what works.  We also have several doctors working with us and some of them actually know their stuff, and lots of test results, which also helps.

 

I hope that you get things figured out.

nvsmom Community Regular
nvsmom
Posted

(hugs)

From my third to sixth month gluten-free, I felt my worst. I would get periodic (autoimmune) arthralic attacks with a lot of fatigue and hair loss in the past to the point that I was looking into lupus. I saw a rheumy at that time and she was positive that it was all caused by lingering celiac/gluten intolerance issues.  I am hoping she is right because I have been almost pain-free for months now.

 

It may need more time. Those symptoms can really hang on a loooooong time. Unfortunately.  :( In the mean time, you might as well look into other causes; as we all know, it's not always a gluten intolerance thing.

 

Best wishes.

Gemini Experienced
Gemini
Posted

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?

 

I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

Yup, Kareng........pretty radical, I agree.   ;)   There may be another AI problem brewing and it may have zero to do with gluten.  Rheumatoid arthritis and thyroid disease will give a person painful joints.  These 2 diseases are common with Celiac.  Even without these 2 issues, you need to be gluten-free for a quite a while before symptoms subside.  I did not get rid of my last symptom, bone pain, until 3 years post gluten-free and I was super strict with my diet as I am very, very sensitive.

 

You can see a doctor and be tested for other AI issues but if you are on prednisone, your testing will most likely be negative.

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

Celiac.com Sponsor (A8-M):


Happyw5 Explorer
Happyw5
Posted

I agree about going to a doctor.  Are you on any medications?  Some medicines have side effects and they can start at any time.  I have questioned my gluten issues-but every time I tried to reintroduce it, it ended badly!  For a long time I thought every pain and symptom was because of what I ate..  I was put on an anxiety medication at the time, becuase I was at the dr all the time with "problems."  I took the medicine for about a year and I have to say it really helped.  I don't doubt that all the problems I was having weren't real, I think I was just so obsessed with paying attention to my body that I didn't know what was normal anymore.  I was taken off the medicine about 2 years ago and I am doing great.  I am not on any medicines right now, I am gluten free, and working on healthier eating and less chemicals in general...  Good Luck, just don't refuse to think it could be something else

mommy2krj Explorer
mommy2krj
Posted

I was going to also say that maybe it isn't the gluten that is causing this issue.

A lot of medications will say in their little fine print warnings that you can have reactions to them up to 12 months later. Maybe this is a reaction to the prednisone? Or it could be a million other things besides Celiac. The joys of this disease, figuring out which reactions are related to what!

 

Hope you can get it all figured out. Stay strong and just keep wading through until you get to the other side, where you feel better and know what all your reactions are.

Archived

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

Go to topic listing

  • 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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748
    PatientOne
    Newest Member
    PatientOne
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.