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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,996
    • Most Online (within 30 mins)
      7,748
    Sasha Bondarev
    Newest Member
    Sasha Bondarev
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      Gluten free nuts

      By Scott Adams · Posted

      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By Scott Adams · Posted

      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Wheatwacked · Posted

      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
×
×
  • 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.