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

Hello!

CommaHolly

Recommended Posts

CommaHolly Newbie
CommaHolly
Posted

Hello! My name is Holly, and I'm 48 years old.

 

My story is long and boring,,,,,,and I'm not yet even sure I belong here,,,,,,

 

let me suffice it to say that I'm persuing being tested for Celiac (my doctor's appt is thursday) because for 20 years, I've had symptoms that until recently, I didn't even have a CLUE could be connected,,,,,,,

 

They include in somewhat chronological order :

 

constipation

diarrhea

migraines/bad headaches

late periods

unbearable cramping and pain at period time and just before

hip pain

lower back pain

joint pain (knees, elbows, shoulders and hips)

terrible memory issues (scary ones,,,,,like not remembering how to get home from a local store I go to almost daily)

word dropping

tingling fingers and toes

a numb foot and outer right leg (for the past 3 years that has yet to have sensation return)

muscle cramping (sometimes severe)

 

I've been misdiagnosed with endometriosis (for which I later had surgery to diagnose,,,I did not have endo.) and fibromyalgia (they dumped this on me after being tested for everything else they could think of) and IBS.

 

Or possibly I DO have some of those things,,,,,,,,,,who knows at this point????

 

I'm just sick of not knowing, sick of being thought of as crazy, sick of whatever I'm diagnosed with not "quite" fitting,,,,,,,

 

I've been tested for MS, AS, lupus, RA, and ankylosing spondylitis,,,,,,,,,,and probably a bunch of other things,,,,I have none of them.

 

I've had blood panels (all appear to be normal), X-rays and MRI's,,,,,,also normal. I have some minor bulging of discs in my lower back, but nothing that should be causing the pain I'm feeling,,,,,,so says the neurologist,,,,,,,

 

they can't explain the numb right leg and foot,,,,,nor the very slow reflex responses in that leg,,,,,,,,,nor what appears to be permanent nerve damage in the two small toes in that foot. I'm actually convinced my neurologist thought I was a nutcase until that test,,,,,,you can't fake that stuff.

 

I'd never have even CONSIDERED Celiac if it weren't for my daughter,,,,,,she's 28 and has begun having the same problems I had at her age,,,,,hip pain, to be exact.

 

She has no health insurance, but she went gluten free and has had tremendous success lowering her pain levels,,,,,,,,,,it got me to thinking,,,,,

 

frankly, I'd rather not have it,,,,,,,I love gluten,,,,,,I'm addicted to anything with gluten in it,,,,bread, cake, cookies,,,,,,,

 

I might cry if I have celiac. I'm not kidding.

 

Most people with celiac are skinny, though,,,,,I am definitely NOT skinny, so I'm sort of praying that's a sign I don't have it,,,,,,

 

Anyway, I just wanted to say HI! and let you all know I'm reading,,,,,,,and kind of scared, to be honest,,,,,,and let you all know I'd really rather not be part of this group,,,,,,,,I'm sure you're all very nice and all :)  but I'd really rather NOT have celiac. I totally suck at following diets.

 

Have a wonderful day :)

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome!

If you decide to test for celiac disease, do not stop eating gluten until all testing is complete. Testing won't just help you, but your daughter as well as celiac disease runs in families.

Both my husband and I are gluten free. The diet is not bad and I bake gluten-free goodies and no one can tell the difference! The best thing? Feeling great! Better to find it before you cause long term damage. If your tests do not support a celiac disease diagnosis, try the gluten-free diet for 6 to 9 months. Many folks find relief.

LauraTX Rising Star
LauraTX
Posted

Welcome!  Let us know how your doctor appointment goes.  Like cyclinglady said, keep eating gluten until testing is done, and don't not consider a gluten-free diet if the results are negative.  If you do have to go gluten-free, there is definitely an adjustment period, but the worse off you are before going gluten-free the more instant reward you get when you start to feel better.  Just have to learn to substitute things when you cook and it eventually becomes second nature :)

Lee uk Rookie
Lee uk
Posted

Welcome

I only went to my GP yesterday and am having the blood test tomorrow, I am still eating gluten until they have done the tests, I really don't wona eat it now but I have eat it for 43 years so a few more weeks I will have to just Cary on. the doctors appointment goes well

CommaHolly Newbie
CommaHolly
Posted
  • Author

thanks for the welcome. My daughter is having such good luck with gluten free, I may just have to try it even if the test is negative.

 

I'm sort of eating a ton of gluten now until the test is over, but thanks for the reminder :)

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome to the forum, Holly -

 

I know what you mean about not really wanting to be "one of us", but being gluten-free isn't bad at all and as others have mentioned it can make you feel so much better that the trade-off is more than worth it.  Either way, please stop back and let us know how the tests went. 

If it is Celiac, my suggestion is to focus on the positive - that you found it before it gave you something really serious, like severe thyroid problems or cancer.  And all you have to do is not eat gluten.  No medicine, no side-effects, no surgery, no long-term medical treatments, no medical bills, etc.  Just a diet adjustment.  It the grand scheme of things, it's actually one of the better diseases to have if you have to have one.

 

But it's still ok to cry - we're here for you!

 

Good luck!

bartfull Rising Star
bartfull
Posted

What they said! :lol:

 

But I just wanted to add that even though some doctors still claim that most folks with celiac are thin, that is not true. There are quite a few people with celiac who are overweight. (I speculate that becuase we aren't getting the nutrients from our food that we overcompensate by overeating. Sugar will make even a celiac gain weight.)

 

Here are the tests you should ask for:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

Make sure you get copies of the test results and the ranges, then post them here so we can help you interpret them.

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome!

 

I did some crying at first, but now I am happy because I am BETTER.  I hope all the same for you (but for the crying).  My story is similar in many respect.  I carried the celiac weight at least 30 years before I couldn't carry on any longer.

 

D

CommaHolly Newbie
CommaHolly
Posted
  • Author

thank you all,,,,,,,,somehow, it doesn't seem so bad now :) My sister has juvenile diabetes,,,,,,,,,that's bad. This,,,,,,it doesn't feel so bad anymore.

GottaSki Mentor
GottaSki
Posted

Welcome Holly!

 

It's okay to cry....it is extremely frustrating to be continually dismissed by doctors for normal results.  Except for anemia and low vitamin D I never had a positive blood test until I was finally tested for Celiac.

 

Not everyone with celiac is underweight.....I was overweight while eating very well with significant exercise my entire life, but never once had a doctor believe me about my diet and exercise level.  Many of us are of average or overweight with C rather than skinny with D!

 

Hang in there and do let us know the results of your blood work.  Do not remove gluten until you and your docs decide if an endoscopy is the next best s step for you.  After you are sure testing is complete...remove ALL gluten for at least six months....you may find improvement quickly, but it can take time given your symptoms...I know because I could have written your post myself 5 years ago.

 

Good luck to you and your daughter :)

frieze Community Regular
frieze
Posted

your sister should be tested also, it is not uncommon to find Type I diabetes with celiac.

anand Newbie
anand
Posted

Hi,

Have u checked ur b12 and vitamin d... Pl. ask them to do it with celiac panel , if not already done....

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Just wanted to add that you might want to consider a bone density test.  Osteopenia and early osteoporosis are common in Celiacs due to the poor absorption of nutrients.

CommaHolly Newbie
CommaHolly
Posted
  • Author

Just wanted to add that you might want to consider a bone density test.  Osteopenia and early osteoporosis are common in Celiacs due to the poor absorption of nutrients.

my mother has osteopenia,,,,,,,,,and she's had major indigestion problems her entire life,,,,,hmmmmm.

CommaHolly Newbie
CommaHolly
Posted
  • Author

Hi,

Have u checked ur b12 and vitamin d... Pl. ask them to do it with celiac panel , if not already done....

not that I know of,,,,,,,,I'll talk to the doctor about it tomorrow! thanks!

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.