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
Jimmymtfan19
Posted

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
Jimmymtfan19
Posted
  • Author

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
kareng
Posted

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
cyclinglady
Posted

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
Jimmymtfan19
Posted
  • Author

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
kareng
Posted

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
Jimmymtfan19
Posted
  • Author

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
Jimmymtfan19
Posted
  • Author

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
kareng
Posted

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
Jimmymtfan19
Posted
  • Author

They said both were positive

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,705
    • Most Online (within 30 mins)
      7,748
    Lyana Chahine
    Newest Member
    Lyana Chahine
    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

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.