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

Muscle Fatigue /stiffness


Jimmymtfan19

Recommended Posts

Jimmymtfan19 Newbie

Anyone's throat and face musclkes feel tired and stiff along with discomfort when swallowing ect? Been gluten free about a month. BC powders seem to help


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



Celiac.com Sponsor (A8-M):



Jimmymtfan19 Newbie

i had my blood work printed out from when my celiac was at it worst, this is what they say i have anyway doctor said my vili are flat and damaged. BUT my blood levels were all normal igA was 171 i think and immunoglubulin G i think was like 100 not sure what the others are they didnt check them all, all cbc was normal, thyroid was normal, so how the hell can i have celiac but normal blood levels, i have had it for 2 years and was horribly constipated, tarry black fatty nasty smelling stools, ribbon like stools, pulsating abdomen, fatigue, headaches, weakness , throat discomfort, abdomen swollen, im tired of hurting and nothing seems to work, and the blood work isnt showing i have it. are there certain deficiencies that could be causing my extreme muscle fatigue and tiredness, even my face muscles get weak and talking seems to take alot of effort. 

kareng Grand Master

I'm not sure what you tests actually had - but a TTg IGA of 100 would  be extremely positive in most labs scales.

 

Maybe you could get the actual results with the scale or ranges.

cyclinglady Grand Master

Check the copy of your labs like Karen suggested. Your previous posting stated that your "antibodies were high".

I am assuming that you are really having an off day! It will get better. You just need more time.

You mentioned having a CBC and a thyroid test. You need to ask your doctor to check your vitamin levels (e.g. Vit. D, B-12, folate, etc). That is not included in a CBC.

Keep looking to your diet too. There is a huge learning curve! Get plenty of rest and make sure any meds or supplements are gluten free. When in doubt, ask us! It is hard to think clearly when you are so ill! We have all been there!

Jimmymtfan19 Newbie

They told me they were high I thing they did the ttg iga test and it said immunoglobulin was 100 and ttg iga was 173 thyroid and all cbc were normal. I'm going to get vitamin levels checked

kareng Grand Master

They told me they were high I thing they did the ttg iga test and it said immunoglobulin was 100 and ttg iga was 173 thyroid and all cbc were normal. I'm going to get vitamin levels checked

I'm not sure what is going on but your first post says your blood tests were normal. Now you say they are positive. Anyway.....

It will take a few months, at least to reverse vitamin deficiencies from celiac

Jimmymtfan19 Newbie

I didn't know what test they ran but if you Google normal iga levels I thought mine were normal.


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



Celiac.com Sponsor (A8-M):



Jimmymtfan19 Newbie

80-350mg/dl iga is normal range from what I read. So 173 is normal? But anything over 10 units/ml of ttg iga is positive and high mine is 173 they didn't say if it was ttg iga or specify so I was confused.

kareng Grand Master

You have a normal serum IGA. That just shows that your other tests will be accurate. I'm sorry... could you post what each test actually says? In one post you say they are negative and another that they are positive. It sounds like you make a normal amount of "IGA" so the IGA tests are accurate. It sounds like you had a positive blood test? And positive biopsy?

Jimmymtfan19 Newbie

They said both were positive

ravenwoodglass Mentor

You are very early in the healing process and it is going to take some time to recover. It is quite possible to have a normal CBC on testing and still be celiac. What matters is your postive Celiac panel results. I know it is hard to be patient with your recovery but we really don't have a choice. Do you best to make sure you are doing all you need to prevent CC and if you haven't already do read the Newbie 101 thread at the top of the Coping section. Also make sure your little one gets screened regularly as Celiac is strongly genetic.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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

    • RMJ
      I think Tierra Farms is a gluten free facility, at least that is what it says on the bag of walnuts that I have.
    • Clear2me
      All of a sudden I can't get any gluten-free nuts. There are only 2 nuts available that I can find on the market that are gluten-free. One is Mauna loa brand macadamia nuts, the other is Wonderful pistachios. Other than that all types of nuts that are plain nuts, roasted or raw are no longer gluten-free and are processed and plants that also process wheat.  Has anyone found a source for Pecans, almonds peanuts, walnuts, Pine nuts, etc that is gluten-free?
    • knitty kitty
      @Xravith, How are you doing?   Two cookies are not enough.  For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies.  Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking.  Gluten helps form those bubbles of trapped gases, like a balloon.  Artisan breads, and thick, chewy pizza crust are good examples.  Look at the size of the bubbles in cakes and cookies.  Small bubbles, so not lots of gluten in them.  You'd have to eat tons of cookies to get ten grams.   Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests.   If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives.  Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done.  You do not have to eat gluten to have a genetic test done.  Celiac is inherited.  It's in your genes.  Genes don't change whether you eat gluten or not.  A genetic test looks for the most common known Celiac genes.  If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms.  If you do have Celiac genes, you can assume that those genes are actively causing symptoms.  An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done.   You should also be checked for nutritional deficiencies.  Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency.  Thiamine, Vitamin B 1, is one of the eight essential B vitamins.  Thiamine can become low quickly because our bodies use so much of it everyday.  If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill.  Same with the other seven B vitamins.   Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease.  Please get checked for nutritional deficiencies.  Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing.  
    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
×
×
  • 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.