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 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,124
    • Most Online (within 30 mins)
      7,748
    Kihance
    Newest Member
    Kihance
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • CeliacMom79
      tTg at 234 at 6 month bloodwork

      By CeliacMom79 · Posted

      Hi. Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against. All his other liver test functions have been normal.  Just the elevated ALP. Thank you.
    • NoGlutenCooties
      gluten-free in Wilmington, DE

      By NoGlutenCooties · Posted

      Hi all I'm looking for a safe place to eat in Wilmington, DE. Any ideas? Thanks Jenny
    • trents
      tTg at 234 at 6 month bloodwork

      By trents · Posted

      Welcome to the forum, @CeliacMom79! Not sure what you mean when you say you are pleased that his ttg levels are now at "detectable levels"? Earlier in your narrative you said they were originally above 250. Was 250 the upper limit of the scale that was used, such that you actually don't know how high they were originally, i.e. "off the charts"?  Were his other liver test functions (ALT, AST) originally elevated?
    • CeliacMom79
      tTg at 234 at 6 month bloodwork

      By CeliacMom79 · Posted

      Hello! This is my first time posting, but I have been so helped by the reading other's posts over the last 6 month. My 16 year old was diagnosed about 6 months ago with Celiac despite He had almost no symptoms aside from occasional loose stools and low weight gain. His tTg was over 250.  He also had anemia with abnormalities to his red blood cells, vD deficiency, elevated ALP and a few other nutritional findings.  He has had a couple of accidental gluten exposures in the last 6 months but overall has (as far as we know) been completely gluten free.  We scrubbed our kitchen down and replaced cookware at the time of diagnosis and our home is completely gluten-free.  We eat out only rarely and then at restaurants we know are aware of cross contamination. He is also not eating oats as a precaution until we get his numbers down. We were told by his Peds GI doc to expect normalization of his labs within 2 years. He just had his 6 month bloodwork and his tTg is now at 234.  All of his abnormal nutritional findings, the anemia and his blood counts have normalized. His ALP is still elevated (which we think may be a normal finding as he's been having a major growth spurt and further tests to check his liver function have been normal). He no longer has loose stools, he feels great and has grown 3 inches and put on about 20lbs in the last 6 months.  This all seems positive. I am happy that we now have his tTg at detectable levels, but I am wondering if anyone has had a level that is still this high 6 months post diagnosis? Thank you so much!  I appreciate this community.  
    • Zuma888
      How to interpret my genetic test results

      By Zuma888 · Posted

      Hello, These are my genetic test results: Test                                                          Result DQA1:                                                      DQA1*02 DQA1:                                                      DQA1*03 DQB1:                                                      DQB1*0302 DQB1:                                                      DQB1* HLA-DQ2 (DQA1*05/DQB1*02) :             Negative HLA-DQ8 (DQA1*03/DQB1*0302):          Positive   Is this saying I inherit DQA1*03 from one of my parents and DQB1*0302 from the other? And is one of these enough to say I have HLA-DQ8 or do I need both? Thank you.
×
×
  • Create New...