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

The 100% Positive Thread


parmeisan

Recommended Posts

parmeisan Newbie

Got something great to say about Celiac Disease that you want to shout off the rooftops?

Know someone who needed to be convinced to get tested and have some advice you gave them that helped?

Sure, we all know that getting a Celiac diagnosis, or even suspecting one, can be scary and frustrating. But there are good things too. Please share how your diagnosis has made you a happier person!

(Please keep this specifically to Celiac; you can start another thread about intolerances if you like but I'd really like this to be something that we can show to people to help give them motivation to get tested for celiac disease).

Thanks! I'll start:


> I have discovered that being hungry isn't supposed to hurt.

(I had always just assumed that pain was hunger.)

> I am feeling more motivated to do things, which in turn makes me feel better about myself.

> I've discovered that it's much easier to eat healthy than I ever imagined.

When you're forced to think about everything that goes into your mouth, it's easier not to eat those potato chips. Similarly, when you are forced to plan each meal in advance or risk not having anything in the house you can eat, it's easier to keep the house stocked with veggies and all that good stuff. I am starting to actually have a positive relationship with food.

> As a combination of all of the above, I have lost 5 pounds in less than a week.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Let's see:

I look 20 years younger

My boobs are more perky

My wrinkles are gone

:ph34r: Ok.....Maybe not but

I feel better & more perky!

More energy!

My blasted anemia that made me feel dizzy and I couldn't get enough oxygen to my brain is gone!

I have tried new foods I didn't know existed and like some of them!

I have a great excuse not to eat the rubber chicken at an awards banquet!

ravenwoodglass Mentor

I'm still alive.

Adalaide Mentor

It was a complete fluke that I was even tested for celiac. I'm not sure I would have accepted it if it didn't just happen while I was out like a light. It happens to be one of the best things that has ever happened to me.

I don't feel amazing exactly, but compared to a year ago I feel great.

I have enough energy to leave my house a few days a week and to be out of bed most days which is awesome!

I'm eating healthy (more or less) for the first time in my life and it feels pretty darn good.

jerseyangel Proficient

I'm still alive.

Thank goodness for that :)

For me, gone is the anemia that I had for years (despite supplements), tingling and numbness in my lower legs, face and arm, night sweats, constant nausea (when I worked outside the house I never ate breakfast because of it), chronic diarrhea, fatigue, brain fog <_< , easy bruising, in the last 6 months before diagnosis unexplained weight loss. My gynecologist poo-poo'd the idea that my endometriosis was linked somehow but I wonder.

I lived with all that for 20 years--medical tests always came back normal so I managed to work around it thinking it was just me.

bartfull Rising Star

I no longer eat the junk food full of chemicals that would have killed me in the long run whether I had celiac or not.

And I feel closer to my Mom even though she passed away several years ago. She had celiac, and now that I understand how badly she suffered I wish I could tell her. But she knows...

psawyer Proficient

I have not had a migraine in twelve years. That was a bonus!


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



Celiac.com Sponsor (A8-M):



ndw3363 Contributor

Peter, I'm with you on the migraines! Only time I get them now is if I get accidentally glutened. Let's see, I'm healthier than I've ever been, I'm finally at a mostly normal weight and able to stay at it without much effort (I finally self diagnosed when I was losing weight very quickly and couldn't afford to lose another pound), I get compliments on my skin and hair all the time, I no longer have to live with bloating and gas all the time, blood sugar has stabilized. And ya know, I guess I don't bruise as easily as I used to either - didn't think of that until I saw someone else mention it!

nvsmom Community Regular

Without trying I lost 15lbs in 2 months while still eating icecream a few times a week.

My belly is essentially GONE! I thought it was middle aged belly fat. lol

No more stomach aches every day.

No more migraines.

Bathroom trips aren't nearly as ...smelly.

JNBunnie1 Community Regular

I have a butt now!

Sunny600 Rookie

I don't have abdominal pain anymore. After being subjected to a bunch of tests as a teenager because of it, my mom finally told me it was "normal" to have "aches and pains". Well, guess what? It's NOT normal!

Tilley

lovegrov Collaborator

No DH, mouth blisters gone, and it was celiac disease, not non-Hodgkins lymphoma, causing my illness. And I quit smoking while I was ill.

richard

LauraB0927 Apprentice

No more acne, no more chest pains, no more acid-reflux - and best of all, I've been able to lose all that stubborn weight that wouldn't come off before!!!! 16 pounds down and a couple more to go!!!! I'm going to look great for my wedding next year!!!

Darn210 Enthusiast

I don't have to worry (for my daughter's sake) what the side effects are on a lifetime's worth of medication . . . 'cause seriously, how do they really know what being on a medication for 80 years would do to you?

Gfreeatx Apprentice

I love this thread!! Two years after my diagnosis:

I no longer pass out when I simply try to stand up.

I am free from my migraines, neuropathy and heart palpatations.

I have become an even better cook and eat healthier than I ever did before.

My recent biopsy shows I now have a normal small intestine when my original showed Marsh 4 destruction!! :D

Bubba's Mom Enthusiast

I don't have to scope out where the bathrooms are wherever I go! :D

IrishHeart Veteran

I'm still alive.

:) Me, too. (whew!)

Persei V. Enthusiast

I'm eating way healthier

Stomach is fine, I rarely feel bloated

I learned how to cook a handful of very delicious (and healthy) dishes

psawyer Proficient

I posted before about migraines, but here is another thing. I have not vomited after eating in twelve years. It was a common occurrence, sometimes after eating just a few bites.

scaredblossom Rookie

I feel pretty great!!! I haven't been sick except for when I have accidentally been glutened!!

T.H. Community Regular

My son can get through the day without having a screaming fit.

My daughter is no longer so depressed that she can see nothing good about herself.

I have discovered that I don't actually dislike crowds or feel the need to isolate myself like I used to when I was sick all the time. Who knew that something I thought was 'just me' was actually gluten!

bartfull Rising Star

I have saved a lot of money on toilet paper. :lol:

IrishHeart Veteran

I have saved a lot of money on toilet paper. :lol:

:lol: :lol: :lol:

NGG Newbie

My daughter and I both feel so much better, obviously, but the best thing to me is that my daughter is eating such a better variety of foods, and much healthier foods. She snacks on apples dipped in (natural) peanut butter now. No more crackers for every snack! I swear she ate nothing but crackers and bread before, but I saw her snacking on carrot sticks earlier too, and she said they tasted good. It's too bad she had to be forced to improve her diet due to this, but it is good that her diet has improved regardless. She'll be healther both for avoiding gluten, which makes her so sick, but she'll be healther on top of that because she's eating so well.

scarlet-willow Rookie

The gluten-free Banana-Nut muffins I made taste better than the old ones I used to make with wheat flour :)

Archived

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

  • 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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748

    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.