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

Was I Misdiagnoised Maybe?


Debzo

Recommended Posts

Debzo Newbie

I was diagnoised with Rheumatoid Arthritis in 2003 because of a swollen knuckle. The first doctor said he thought I had Wilson's Disease but the one he sent me to said my RA Factor was real high and I had Rheumatoid. Throughout my life I have had terrible migraine auras from time to time, panic attacks, pvc's, psorisis on my knees and elbows and scalp, rapid heartbeat after eating, horrible joint pain and swollen feet and ankles. It became worse over the past few years. I decided it was my age and the RA creeping up on me. A few years ago I tried to eat healthier which included Special K cereal and Triskets. I just felt worse and worse. I am wondering if all of these symptoms could be Celiac? Thanks.


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

It's very possible you could have both since autoimmune diseases tend to occur together. I just found out that my RF was slightly elevated. I went to my pcp to see if I need to worry (I have no symptoms). I was told I was at increased risk and they want to recheck everything in Feb. As of right now I don't need to worry. I would request a full celiac panel to include: total IgA, IgA/IgG tTg(tissue transglutaminase), and the newest test IgA/IgG DGP (deamidated gliadin peptide). The last two are taking the place of the older IgA/IgG anti gliadin antibodies. You can have those run if the newer test isn't available. You need to stay on a regular gluten filled diet to get the most accurate test results. Same goes if you want to have a upper scope/biopsy. After you complete all your testing give the diet a try. You may find you get relief from the rheumatoid symptoms.

Debzo Newbie

It's very possible you could have both since autoimmune diseases tend to occur together. I just found out that my RF was slightly elevated. I went to my pcp to see if I need to worry (I have no symptoms). I was told I was at increased risk and they want to recheck everything in Feb. As of right now I don't need to worry. I would request a full celiac panel to include: total IgA, IgA/IgG tTg(tissue transglutaminase), and the newest test IgA/IgG DGP (deamidated gliadin peptide). The last two are taking the place of the older IgA/IgG anti gliadin antibodies. You can have those run if the newer test isn't available. You need to stay on a regular gluten filled diet to get the most accurate test results. Same goes if you want to have a upper scope/biopsy. After you complete all your testing give the diet a try. You may find you get relief from the rheumatoid symptoms.

Thank you Roda! I did begin a gluten free diet a few weeks ago and I know it sounds odd but my eyes don't seems as blurred anymore. I am also having a real hard time finding out what products are gluten free, such as makeup, shampoo, foods, ect?

Roda Rising Star

At first it is simpler to go with naturally gluten free foods such as meats, fruits, veggies, brown/white rice, and dairy(if you can tolerate it). Betty Crocker and King Arthur have some good mixes. Rice, corn, honey nut, cinnamon, and chocolate chex are gluten free. There is a new gluten free Rice Krispies and Fruity and cocoa pebbles are gluten free also. Yoplait yogurt is safe it will say gluten free on the lable. Udi's bread and bagles are good. Corn tortillas are a good sub for flour ones. Kraft, ConAgra, and Unlevier are full gluten disclosure companies. If it is not on the lable it isn't in there (wheat, barley, malt, rye).

You will need a separate toaster and pasta strainer for guten free bread/pasta. You need to replace any wooden utensils/cutting boards if there was ever gluten on them. Cast iron needs stripped and reseasoned(not sure how to do it others may know). Here is a list of things I bought extra of: toaster, cutting boards, cooking utensils (mine were old anyway). Things I replaced: any baking items and herbs/spices that may have been cross contaminated, I got rid of any regular flour in the house and will not allow any baking with it, any condiments that may have been cross contaminated(CC) (others in the house finished them up and now we share following strict handling to avoid CC), waffle iron, any scratched or worn pots/pans, all my aluminum/metal bakeware (had baked on residue). I had several stainless steel and caflon cookware that was in excellent shape and did not replace. I was able to completely scrub my sheet cake pans. I kept and cleaned all my glass/pyrex bowles and bakeware. Any unscratched plastic storage containers I also kept.

It is very overwhelming at first. But once you settle in it will become easier.

Debzo Newbie

At first it is simpler to go with naturally gluten free foods such as meats, fruits, veggies, brown/white rice, and dairy(if you can tolerate it). Betty Crocker and King Arthur have some good mixes. Rice, corn, honey nut, cinnamon, and chocolate chex are gluten free. There is a new gluten free Rice Krispies and Fruity and cocoa pebbles are gluten free also. Yoplait yogurt is safe it will say gluten free on the lable. Udi's bread and bagles are good. Corn tortillas are a good sub for flour ones. Kraft, ConAgra, and Unlevier are full gluten disclosure companies. If it is not on the lable it isn't in there (wheat, barley, malt, rye).

You will need a separate toaster and pasta strainer for guten free bread/pasta. You need to replace any wooden utensils/cutting boards if there was ever gluten on them. Cast iron needs stripped and reseasoned(not sure how to do it others may know). Here is a list of things I bought extra of: toaster, cutting boards, cooking utensils (mine were old anyway). Things I replaced: any baking items and herbs/spices that may have been cross contaminated, I got rid of any regular flour in the house and will not allow any baking with it, any condiments that may have been cross contaminated(CC) (others in the house finished them up and now we share following strict handling to avoid CC), waffle iron, any scratched or worn pots/pans, all my aluminum/metal bakeware (had baked on residue). I had several stainless steel and caflon cookware that was in excellent shape and did not replace. I was able to completely scrub my sheet cake pans. I kept and cleaned all my glass/pyrex bowles and bakeware. Any unscratched plastic storage containers I also kept.

It is very overwhelming at first. But once you settle in it will become easier.

Thank you so very much. It does seem hard to do and takes a lot of will power. I am new to the website and posted two posts by mistake. On my other post someone suggested I go back to gluten until I am tested for it. I actually hope it is the gluten so I have an answer and can control it with diet and not a bunch of medication. I obviously have some sort of food allergy because I also deal with dark circles under my eyes and doctors have told me it was due to a food allergy but never tried to find out to what.

ravenwoodglass Mentor

Celiac can cause inflammation in just about any area of your body. I got very lucky and my arthritis went into remission after a few months on the diet but not all see the same results. If you want more testing you do have to go back on gluten until that is done. The diet won't effect testing for anything other than celiac though. Do go with as much whole unprocessed food as you can. Check out the products section to help with toiletries and such. There are gluten free makeup lines and some companies will label gluten clearly in their hair care products like Dove, Suave, Giovanni, Garneir (what I use for hair and skin care), Shikai and a new company called Himalaya even labels their gluten-free products.

Debzo Newbie

Celiac can cause inflammation in just about any area of your body. I got very lucky and my arthritis went into remission after a few months on the diet but not all see the same results. If you want more testing you do have to go back on gluten until that is done. The diet won't effect testing for anything other than celiac though. Do go with as much whole unprocessed food as you can. Check out the products section to help with toiletries and such. There are gluten free makeup lines and some companies will label gluten clearly in their hair care products like Dove, Suave, Giovanni, Garneir (what I use for hair and skin care), Shikai and a new company called Himalaya even labels their gluten-free products.

Thank you all so much! I will try anything to control my auras, panic, and pvc's. I do not smoke, drink, or take any medications so I am sure diet plays a huge role in my issues. I also have very dark circles under my eyes and have read that is also tied to allergies. Sometimes I feel I am allergic to everything.


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



Celiac.com Sponsor (A8-M):



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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

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

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748

    Knotalota
    Newest Member
    Knotalota
    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
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.