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

Strange Symptoms Even For Celiac?

ali786

Recommended Posts

ali786 Newbie
ali786
Posted

Hi everybody. I am very glad to have found this forum. I have been reading so many of your posts and they have been very informative. But so far I haven't found people with symptoms such as mine.

Its been more than six months since the problem started.

Current age 27- Do people get Celiac this late in age?

Lower back pain for 6 years, worse in the morning, and only goes away with excercise and since the D began I have been expereincing pain in my hips?

I have multiple subcutaneous lumps/bumps all over my back which I first noticed around the same time as D?

I decided to go gluten free and it was AWESOME, I felt so good, no more D, no more waking up at night feeling hungry...its been 4 weeks but a couple of days ago I got recurrence of D for 2 days even though being gluten free. So I have been off gluten-free diet for 3 days now BUT no D but I am feeling crappy!

I don't know if anyone has noticed this about themselves is but my tounge is swollen well it sork of looks like a strawberry with the tase buds being HUGE...I think it may have to do with vitamin deficiency.

I have one female cousin with Celiac, Fatehr with Rheumatoid, Uncle died of Lou-Gherig's...apparently rest of family is ok.

I have an appointment with the Doc this week.

Celiac SUCKS even if it turns out I don't have it.

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

Celiac.com Sponsor (A8-M):


Lymetoo Contributor
Lymetoo
Posted

sounds like it COULD be vitamin deficiencies....but with your family history, I would check out Lyme disease as well. Many with Lyme were misdiagnosed with ALS or RA, among other misdiagnoses like FMS, CFS, etc.

Sounds like Gluten is a big factor, however. Make sure your diet is CLEAN.

CDFAMILY Rookie
CDFAMILY
Posted

Ali,

The bumps could be DH which is a skin form of Celiac Disease. Do they itch?

The swollen tongue with bumps could be a B12 deficiency. I had that all the time. I alsoI also would get the worst canker sores from biting my inner lips and tongue. I also had a burning tongue whenever I would eat salads....I thought everyone had that until I took B12 and went gluten-free.

Make sure when you see the doctor to ask for a B12 test and while he is at it ask for a homocysteine and Methylmalonic Acid test which will confirm the B12 deficiency if you happen to be taking some B12 but not enough to replenish if you are malabsorbing. Also, I would ask for a complete iron and ferritin test and check for low lymphocytes and low vitamin D.

Also, they may say your B12 is normal but anything under 500 is getting in the dangerous zone. I think the level is still around 220 which is in the major neurological problem area. I had double vision and vertigo at 346 and was not treated until I insisted on a recheck and had dropped to 206 in just 7 months. By then I had axonal neuropathy and many autonomic problems.

ali786 Newbie
ali786
Posted
  • Author

Ali,

The bumps could be DH which is a skin form of Celiac Disease. Do they itch?

Um I don't think its DH because these bumps are subcutaneous, meaning underneath my skin. But yea I have had a few canker sores too now that you mention it. Luckily so far no neourological symptoms are present.

So far no one has mentioned the AGE? I am 27 and my smptoms started 6 months ago...how about you guys?

CDFAMILY Rookie
CDFAMILY
Posted

Ali,

How did your doctors appt go?

Age 27 that is a wonderful age...my son age 25 was just diagnosed with very few symptoms and over weight.

I was diagosed last year...I will be 52 soon :o

My daughter was diagnosed at age 18

As you can see age does not make a difference for a diagnosis.

lpellegr Collaborator
lpellegr
Posted

I was diagnosed at age 45. I met a woman who was diagnosed at 80, after 8 years of trying to get a diagnosis for her symptoms. Yup, it can happen at any age, and either you had the symptoms all along and just didn't know what they were or thought it was something else and now they are finally bad enough to cause a problem (like anemia, vitamin deficiency, etc), or some illness triggered your immune system to target gluten and it's new. Either way, be religious with your diet! Your diet is your friend or your enemy for the rest of your life, so get used to it. Think of all those weird symptoms as your drill sergeant chewing you out when you screw up!

Sarah8793 Enthusiast
Sarah8793
Posted

I can't help much with the symptoms questions, but as far as age goes, I think it began when I was 31 but I didn't figure it out until this year and I am almost 37. There isn't any hard and fast rule about the age of onset, just generalities.

Sarah

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

Celiac.com Sponsor (A8-M):


M-3 Gal Rookie
M-3 Gal
Posted

That sounds strange....I have not even been diagnosed yet.....all test have come back negative for anything so I go to see the gastro doctor who did my endoscopy next week and until then I have been going gluten and wheat free just to see and keeping a journal of what I eat and how I feel afterwards. My symptoms were back pain stomach pain and burning and strange feeling in throat...they thought I had acid reflux and have me on medication for that. So who knows. Anyway, with those symptons, please see the doctor and by the way, I am turning 39 in a couple weeks so I don't believe age has anything to do with it. However, I wanted to know if anybody knew anybody that got this problem after having braces put on????? This starting happening to me about a couple months after I had braces on.....I was not eating a lot because of the pain from the braces, so my diet was bad and I wondered if this brought on the problem with gluten. Anyway, just a guess.

Mayflowers Contributor
Mayflowers
Posted

My sister's husband has bumps under his skin and she took him to a neurologist. He has some kind of abnormal benign tumors growing along the nerves. They can be removed but she said they can grow back. He has them on his legs I think.

evie Rookie
evie
Posted
Hi everybody. I am very glad to have found this forum. I have been reading so many of your posts and they have been very informative. But so far I haven't found people with symptoms such as mine.

Its been more than six months since the problem started.

Current age 27- Do people get Celiac this late in age?

Celiac SUCKS even if it turns out I don't have it.

Ali: Any age is possible to be diagnosed with celiac disease!! :blink: with your family history does sound possible you could be a candidate for celiac too. the bumps under the skin may be fibromyalgia, are they sore bumps? i was diagnosed with FBS 15 years ago and in Feb. 06 found to have celiac disease. the FBS had gotten better, but is flaring uo again in my shoulders. never too late/\. but the gluten free diet is a blessing!! Otherwise I would feel a lot older than near 78. :):) Luck to you!! evie

lovegrov Collaborator
lovegrov
Posted

Age doesn't matter.

richard

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      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...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      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 s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    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

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • 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.
×
×
  • 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.