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

...not What I'd Planned.

nextjenx

Recommended Posts

nextjenx Newbie
nextjenx
Posted

My name is Jen. I'm 26, female, and my story starts where many stories start: I got dumped.

Keep in mind this was the first guy I'd ever loved. And he was my boss. Who started seeing another employee and proposed to her TWO WEEKS after they were officially 'out'. (He was transferred to another store, but I still have to see her and her stupid rock.) And on top of this I was unsuccessfully navigating the deep waters of a recent promotion my loving boyfriend had promised he'd be there to support me in. (And that's just the tip of the Drama Iceburg.) Yeah, to say I was a hot mess is an insult to hot messes everywhere.

I cried (a lot). I screamed. I listened to emo breakup music in my room while plotting out intricate revenge fantasies against the two of them. And then, as the grinding misery finally started to clear, I noticed something odd. All my crying jags were between 3 and 5 PM. Once I worked that out, I also found I could head that particularly nasty time with a Luna bar.

This got me thinking about my medical history. I've never been a healthy eater, I definitely eat (A LOT) under stress, and while people don't consider me fat, I could easily afford to lose 30 lbs. I've suffered from depression since my teens and been on Prozac since my 20s. I also take medication for ADHD. The root source of my mental health problems, I'd assumed, was the fact I have Asperger's. But with the Luna bar trick, it finally hit me that my terrible diet might have something to do with my depression. So I began researching, and made an important decision: I would fundamentally overhaul my food intake, ostensibly to see if that, combined with starting an exercise regimen, could banish my anti-depressants. Losing weight, of course, would be a side benefit. Because it'd be nice to show up that skinny jerk. (Okay, so I'm still bitter. I would've appreciated the opportunity to reject his marriage proposal, dammit.) But more importantly, I could already feel a difference between when I ate junk and when I ate, say, a green salad. The stomach pains I often got were nowhere to be found. Maybe I could even banish my lifelong issue with frequent stomach upset, gas, and diarrhea!

Did I forget to mention that part? The issues with my stomach had been brought up with doctors on and off, including a test for IBS, but mostly I've just carried Pepto in my purse and lived with it. After the breakup, however, things seemed to get worse, especially during work hours.

So I started avoiding simple carbs and immediately felt a vast improvement. For the first time in my life, my brain was incredibly responsive, actively hesitating when I considered picking up rich, fatty foods, breads and pastas and such. For someone with miserable impulse control, this was nothing short of a miracle. I have to prompt myself to eat delicious food that I suspected would make me feel sick, so I started experimenting with those foods, trying to see a pattern.

I went to see my new primary care physician for a physical before I started exercising again, described what was happening, and long story short, tomorrow I'm getting blood work done for a battery of different tests, but celiac was the only thing mentioned by name. Since my appointment Friday, I've eaten normally, and my body's in full revolt.

I don't know what the tests will say exactly, but I'm weirdly certain I have celiac. On top of my symptoms, there are all sorts of weird, random details in the research I've done that hit too close to home. There were notes about autistic people showing improvement on a gluten-free diet, and about attention deficiencies reducing as well. My mother has hypothyroidism - ostensibly from a head injury 12 years ago, but apparently if it were just the injury she would have seen improvement by now. I noticed a thread in another of your forums about vulvodynia and celiac, which I was diagnosed with last March. Even my ancestry - my father is primarily Irish, while my mother considers herself Mexican but has heavy Spanish and French influences to her ancestry (which the Basque provinces straddle) - would suggest a higher incidence of celiac. I honestly don't think I'm being a hypochondriac here. I can't dismiss one disease having links to all my biggest mental and physical problems and reaching into my family history.

While I'd planned on changing my diet and changing my life, THIS is way more drastic than I'd planned. Good grief.

And so here's my question: was anyone really, really excited when they first found out they might have celiac? I must be crazy unrealistic here. Intellectually I KNOW this is going to be expensive and an enormous pain in the neck. At one point I'm sure I'll be craving everything I can't have. But right now I'm like, "OMG, no more stomach pain in exchange for all the stuff that makes me hella flabby? Sign me up!" I can't believe my brain didn't get here sooner.

So yeah, definitely NOT what I'd expected. But right now while I'm still ingesting gluten with every meal (like I used to), I'm crossing my fingers and hoping the diagnosis moves at a speedy pace. Even my mother, who is the Queen of Worry, has been almost buoyant. She's digging into her memory and finding other possible family links too. Has anyone reacted like this? What happened when reality hit? I've got a half-century of this to look forward to, and is it weird that I find this might be a great thing for my life? What about in the long run? Have people out there gained anything by switching to gluten-free they value now, physical or otherwise? Has anyone out there been successful making other changes in their life alongside their diet?

I'm even tempted to text my stupid ex with a thank you. And maybe I will, after I get a diagnosis. And he cheats on his fianc

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Hi Jen, It sounds like you know that gluten is an issue for you. Good for you for realizing that. Do keep in mind that if you were gluten free for any length of time that you would need a couple months on gluten for the testing. Even when we are on a full gluten diet we still sometimes have false negatives on testing. If your body has reacted badly to adding gluten back in do drop it again after you are done with testing. You don't have to wait for the results just make sure if you are going to have an endoscopy that you continue on gluten until that is done. I am glad to hear your feeling better. I hope it continues. As to the ex well it sounds like you are better off without him. Any man who would propose within a short time of meeting someone else is going to get what he deserves in the long run. There is a good man out there waiting for you and he wasn't the one. Glad your feeling better and I hope you continue to improve.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

And so here's my question: was anyone really, really excited when they first found out they might have celiac? I must be crazy unrealistic here. Intellectually I KNOW this is going to be expensive and an enormous pain in the neck. At one point I'm sure I'll be craving everything I can't have. But right now I'm like, "OMG, no more stomach pain in exchange for all the stuff that makes me hella flabby? Sign me up!" I can't believe my brain didn't get here sooner.

Yes, yes and yes. There are very few foods I really miss because I was practically bedbound after being very sick for a very long time. I went through lots of testing for other things, saw lots of doctoors and not one suspected celiac or food intolerances at all. Keep in mind even if the tests come back negative you can still have a problem with gluten. About 20% of negatives are false negative. If the diet works for you then you don't need a doctor to tell you to eat gluten free. Also it doesn't have to be expensive. Only the gluten-free replacement items like bread, pasta, etc are more expensive than the normal ones. Things like potatoes and rice are cheap and naturally gluten free. And since you said you want to lose weight it's probably better if you avoid gltuen free substitutes anyway. Many gluten-free subs have a higher carb count than their gluten counterparts. I know when I started trying more gluten-free subs my weight loss stalled out.

cassP Contributor
cassP
Posted

jen-

oh boy do i know about heartache :angry: over it, i wish us both MUCH HAPPIER TIMES AHEAD!!!

anyways, in brief- i totally can relate to u- in that i spent most of my life - some depression/anxiety... always working hard on my weight (i was a dancer & did EVERY diet on earth)... it wasnt untill 1998 that i actually found a diet that worked-> Atkins. about 2 months in, i thought this cant be healthy- and i stumbled upon The Bloodtype Diet (please people keep your comments to yourself) & i found (im an O)- that the O diet was SIMILAR in that it was very Paleo/High Protein/no or little carbs.

anyways, i felt incredible & dropped 30lbs. BUT- i had no idea that i would also feel better intestinally, and my excema would completely disappear!!! i had more energy, the butterfly rash on my face disappeared... life long dandruff disappeared.... food cravings disappeared-

i had no idea that any of these issues had anything to do with wheat or gluten... i DID KNOW about Candida.. but it would be another 8 years before i even heard the term "Celiac".

in a way, i feel going gluten free was probably easier for me than for brand new Celiacs- because i had already practiced to some extent for the past decade.

finally getting a DX felt good, because i felt really validated- for the past 10 years- when i would tell people that wheat was the devil for me- they would look at me like i was crazy! but now i had PROOF...

so, i did feel really good... but then there's those days where i have to walk by a Pizza Hut- and the smell almost brings me to tears... because now i know that it's not just a "diet cheat" anymore- its actually a "NO FOREVER"

good luck with everything :)

cassP Contributor
cassP
Posted

PS- just a reminder- that whatever diet you like to do- whether it's a vegetarian, paleo, mediterranean... etc.. that you conform it to your 100% Gluten Free guidelines :)

adab8ca Enthusiast
adab8ca
Posted

First, I am so sorry about the jerk. You sound much better off without him, although I know how hard this can be!

Re: excited with diagnosis, YES!!! I had NO GI symptoms. I lost about 28 pounds from Feb to August without trying, developed crippling anxiety, depression and insomnia and horrible painful neuropathy in my feet. It was so bad I thought i was going to end up in a wheel chair. I thought it was MS, Cancer, brain tumor etc, so I was VERY relieved that it was celiac.

Things will only get better from here :)

srall Contributor
srall
Posted

Excited. Well, yes. All my issues could be fixed with food? Healthy food and NO drugs? Sign me up. It's been life changing. Good luck to you!

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Figuring out I was celiac changed my life too. I understand your hopefulness completely. And if you get negative test results, don't sweat it. Get off the gluten and don't look back. The tests have at least a 20% false negative rate and doctors don't know how severe gluten intolerance can be.

aLayla Newbie
aLayla
Posted

Hi Jen!!

You have a talent for writing!! :)

It's fascinating to read about your discoveries - wishing you to continue on the road to health!!

I mixed you up with another Jen and replied in that thread (and can't edit cause I'm a newbie lol) basically, I'm half hopeful and half-frustrated/scared too, lol.. And still have a long way to go before I get tested.. (and I'm scared of the test too, lol..)

Wishing you to get better - and keep us posted!! :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      New (possible) celiac diagnosis

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • 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.
×
×
  • 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.