Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Could My Symptoms Be Celiac Or Wheat Intolerance


CindyCB

Recommended Posts

CindyCB Newbie

Hi everyone,

My name is Cindy and I am 31 and from the UK.

I am being tested for coeliac disease on Thursday - I have already been tested for this back in 2007 and the result was negative at that time. My mum has selective IgA deficiency but has never been tested for coeliac.

I have been unwell for a number of years but more seriously so for the last 3 - unable to work and more recently pretty much unable to leave the house due to extreme fatige, muscle weakness, dizzy spells and generally feeling unwell.

I was diagnosed with hypothyroidism in April this year from Hashimoto's disease (my mum is also hypo after having Graves disease).

While some physical things have improved on thyroid replacement (hair is starting to grow back on my arms, my eyes look a little brighter) and I find it easier to hold a conversation other things have not improved after 6 months of treatment at all and some are worse still. My thyroid bloods look optimal also.

I experienced a sudden onset of right sided weakness last October following my first ever aura migraine (although I've suffered headaches and migraines for years, never with flashing lights though) which no doctor can explain to me - I have had 2 MRI scans and a CT scan. I visit a chiropractor frequently, I take a high dose of (sublingual) B12, but nothing seems to be helping this problem.

My (excellent) thyroid doctor thought it was all down to being hypothyroid but even he is getting stumped now as it's getting worse rather than better.

Do you think it's possible to have Celiac/wheat intolerance even though my first test showed negative and could that be the root cause of my troubles?

Sorry the the epic first post! :lol:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi, and welcome to the forum.

While your symptoms are not what one would consider a classic presentation of celiac disease, I have learned on here that the expression of symptoms is so varied I would never rule it out. I suggest you wait for your test results from Thursday, and ask your doctor for a copy of them, and then post the results here along with the ranges the lab uses. Sometimes interpretation of the data is quite varied and you will get diagnoses like "borderline" celiac and such. There are many folks on this forum who are expert in reading the test results and would be happy to give you a second opinion if you do not get a positive.

Good luck on finding out what is wrong with you, and stay in touch.

Link to comment
Share on other sites
CindyCB Newbie

Hi Mushroom,

Many thanks for the welcome :)

I was directed back to possible celiac disease from an excellent thyroid forum I use - I have read up more on it and think it's highly possible that I either have celiac or a wheat intolerance.

My old doctor in 2007 thought all my symtoms fitted celiac disease (I am now learning there's SO many more symptoms) as my problems were mainly fatigue and IBS at the time (also bad skin and poor tooth enamel) but the bloods came back negative - I guess I have also learned this can be incorrect.

I now have many more symptoms including depression/anxiety (although these are mostly managable compared to a few months back after I started taking B12) and a lot of body numbness, not just in my hands and feet but in my face, back, legs and arms. It's always on the right (head to toe) and sometimes on the left too - it gets quite painful sometimes. I have the classic bloated stomach and always avoided bread/sandwiches as they bloat me further and make me gassy :unsure:

Results then (2007) were:

Immunoglobulin A - 1.3g/L (reference range 0.8-2.8)

Endomysial Antibody level - Negative

I am having the same 2 tests run again on Thursday - should there be TGG also? I can actually write the extra test on if it's very important to have (my doctor won't mind, she's as keen to get me sorted out as I am).

Thanks again.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
    • ekelsay
      Today, I received the results of my Tissue Transglutaminase (tTG) Ab, IgA test. I am not sure how to interpret the results. I have left a message for the doctor that requested the test but have not heard back. The results stated that the normal range is from 0.00 - 4.99 FLU. My results came back at 92.08. Is this concerning? This seems extremely high for someone who has reached the age of 50 before finding out he has celiac disease.  The reason that I was administered the test in the first place is due to bloating issues that started about a year ago. I met with a Gastroenterologist and after a short question and answer session she wanted to test me for celiac disease and a bacteria test via the H. Pylori Breath Test. She seemed more concerned with the fact that I am a healthy male suffering from Anemia. Is it possible the anemia could be a result of celiac disease? I have been on an iron supplement for the better part of 5 years.      
    • Scott Adams
      Be sure to keep eating gluten daily until all testing is completed.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
×
×
  • Create New...