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

Finally Diagnosed!

JesikaBeth

Recommended Posts

JesikaBeth Contributor
JesikaBeth
Posted

Hello Everyone. Wow, so apparently I am back. I've been on and off this forum for years. Unable to get a diagnosis for quite some time.  A bit of a backstory:

 

Diagnosed with, at the very least, gluten sensitivity via bloodwork.  Told by my doctor that I could still eat gluten. Remained gluten free for a year, but then went back to eating gluten (and justified it by essentially given persmission to choose to eat gluten or not.)

 

Fast forward about 4 years.  Horrible GI problems and some other symptoms (Increasing problems with fibromyalgia and thyroid issues, a lot of pain, etc.). Went in for an endoscopy, and ended up being diagnosed with Cancer! They also took a biopsy for Celiac which came back inconclusive. Bloodwork, again positive for antibodies.

 

Again, fast forward about six months - which brings us to the present. Through chemo, things started to decline greatly (fibromyalgia with a vengance, hashimotos not being controlled, etc.) 

 

I am currently on a break from chemo, and decided to properly address my pain issues, because well now I have the focus and energy.  I went to the doctor last week, he reviewed my tests and confirmed that I do indeed need to be gluten free (he is also tweaking my thryoid med and putting me on a new fibromyalgia med.)

 

So here I am...

 

I'm on day 4 of being gluten free and so far so good.  Admittedly so, feeling a bit overwhelmed...  but I'm back, this time for good. 

 

Looking forward to, and hopeful for, finally feeling better :P

 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Gosh you have been going through so much. I am glad to hear that you are back to being gluten free. There are no tests for gluten sensitivity so if you had positive bloodwork you are celiac. Some of us have seen great resolution of fibro symptoms gluten free so hopefully you will also. Sending good thoughts your way for everything to get much better for you soon.

GF Lover Rising Star
GF Lover
Posted

Keep that PMA...Positive Mental Attitude  :D

 

Colleen

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

Hello, thanks for the replies! I am hopeful for a gluten free lifestyle. I thought I'd be feeling angry, but actually I'm feeling relieved.  Nice to 'meet' you both :)

Gemini Experienced
Gemini
Posted

JesikaBeth.......looking at your signature list of all your health problems, almost every one is a screaming symptom of Celiac. The fact that a doctor told you you could keep eating gluten with positive bloodwork is what should make you angry, not the gluten free diet.  The cancer you were diagnosed with is strongly associated with undiagnosed Celiac.

But you know now that you have Celiac so keep eating strictly gluten free and watch yourself get better!  I also have Hashi's thyroid disease so watch as you heal for symptoms of hyperthyroid because once your GI tract heals, the level of medication you are on may be too much.  That happened to me and I didn't sleep for a week.  :ph34r:   But it was at the 4 year mark so it won't happen (if it happens at all) right away.

 

Best of luck to you and keep up the good fight!  Let us know if you have any cravings for food you miss because there are a lot of foodie experts on here that can help out. 

Feeling deprived is not something that should happen.  :D 

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

JesikaBeth.......looking at your signature list of all your health problems, almost every one is a screaming symptom of Celiac. The fact that a doctor told you you could keep eating gluten with positive bloodwork is what should make you angry, not the gluten free diet.  The cancer you were diagnosed with is strongly associated with undiagnosed Celiac.

But you know now that you have Celiac so keep eating strictly gluten free and watch yourself get better!  I also have Hashi's thyroid disease so watch as you heal for symptoms of hyperthyroid because once your GI tract heals, the level of medication you are on may be too much.  That happened to me and I didn't sleep for a week.  :ph34r:   But it was at the 4 year mark so it won't happen (if it happens at all) right away.

 

Best of luck to you and keep up the good fight!  Let us know if you have any cravings for food you miss because there are a lot of foodie experts on here that can help out. 

Feeling deprived is not something that should happen.  :D

Thank you, Gemini! I am feeling better, and yes I am angry at that doctor.  I am in the process of trying to get my bloodwork results back. So my question is - I can still be Celiac even with a negative biopsy? I thought that biopsies were the confirmation of Celiac, and not the bloodwork?

nvsmom Community Regular
nvsmom
Posted

Gemini is spot on. Those symptoms link back to celiac disease. I would be willing to bet money that you've had it for quite some time.

 

It is not uncommon for celiacs to have a negative biopsy. The last stat I saw was that the biopsy misses 1 in every 5 celiacs - that's a large amount considering doctors put so much stock in the biopsy, "gold standard" and all.   :rolleyes:  If you have positive tests, symptoms, and your health improves on the gluten-free diet, then you have celiac disease. And your symptoms really do scream celiac disease.  Do a search in the forum and you'll see a bunch of posts by other people with the same issues.

 

I hope you are feeling well soon.!

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

Nvsmom beat me to the punch and she gave her usual excellent advice! With all of those associated conditions and especially the lymphoma, you must stay strictly gluten-free because it will help to make you better and calm your immune system down. Do not be overwhelmed. It is new, at first, but you will discover just how much you can eat. Not everyone gets the pleasure of knowing what caused all their medical problems and has the ability to do something about it with diet. You will find that eating gluten-free is small potatoes compared to having chemo.

JesikaBeth Contributor
JesikaBeth
Posted
  • Author

Thanks, Everyone! To be honest I am starting to see the 'symptoms' of other diagnoses calm down a great deal. To the point it's shocking! I feel very, very hopeful and optimistic.  AND to be honest I feel better than I have in years, and I'm only just over a week in!

icelandgirl Proficient
icelandgirl
Posted

I'm sorry that you've been through so much...it's shocking to see how many celiacs have had to deal with so much pain and frustration for so long before diagnosis.

I love your positive attitude though...that will really help you and it's so nice to see it especially when I'm feeling down.

Gemini Experienced
Gemini
Posted

Thanks, Everyone! To be honest I am starting to see the 'symptoms' of other diagnoses calm down a great deal. To the point it's shocking! I feel very, very hopeful and optimistic.  AND to be honest I feel better than I have in years, and I'm only just over a week in!

Amazing, isn't it? It just keeps getting better.

BlessedMommy Rising Star
BlessedMommy
Posted

I'm glad that things have finally gotten sorted out for you! :)

 

I hope for a day where doctors will diagnose based on bloodwork and not use the results of a negative or inconclusive biopsy to override positive bloodwork. 

 

I'm glad that you're feeling so much better! You will keep on improving! This is a great board to learn how to be gluten-free, I've learned so much from this board!  :)

Archived

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

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

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    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

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.