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

For Crying Out Loud

Aphreal

By Aphreal
in Coping with Celiac Disease

Recommended Posts

Aphreal Contributor
Aphreal
Posted

If one more person asks "well, what DO you eat then?" UGH!

Secondly I had my colonoscopy. Couple of spots, waiting on biopsy results.

Thirdly, I had some knarly oral surgery yesterday so now I hurt, I can hardly open my mouth and since I had work on both sides, I have nowhere to chew really. I am doped on vicodin so I cant drive and the kids are being... well kids.

Then my cycle started 3 days early

I can't catch a break!

Changed my antispasmotic and probiotic. Trying to keep the constipation at bay. Trying to bring my blood pressure down but yesterday at the surgeons office it was 145/104. I knew I would be put to sleep and Im on BP meds so why it was so high, I don't know.

*sigh* thanks for listening.

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

Celiac.com Sponsor (A8-M):


RachelisFacebook Apprentice
RachelisFacebook
Posted

Awe. Someone needs a hug!! :wub:

I understand completely about the "What DO you eat?" question. I know its because they care, but there are people out there who have it far worse than I do. I'm going to Thanksgiving at my best friend's house (I'm in college in TN, and my family is in PA, so going home isn't quite an option), and its harder on me than I think them. But I know its because they're concerned and don't want me getting sick.

:wub:

tehjrow Rookie
tehjrow
Posted

I hear ya, i'm having a bad day also.

Got glutened a few days ago, still fighting diarrhea and found out last night my wife is divorcing me.

It can only go up from here, RIGHT??

i-geek Rookie
i-geek
Posted

*hugs* Sorry you're having such a rough go.

You need a smart-a$$ answer for the "what DO you eat?" question. You could always respond thusly (with a big smile on your face and a cheerful voice): "Puppies! They're gluten-free."

Aphreal Contributor
Aphreal
Posted
  • Author

I hear ya, i'm having a bad day also.

Got glutened a few days ago, still fighting diarrhea and found out last night my wife is divorcing me.

It can only go up from here, RIGHT??

What the heck? I am SO sorry. That is horrible!! Stress is a big trigger for my symptoms and that would take me over the edge. I really am sorry, lifting you up for strength.

Thank you all for the encouragement. I knew I could come here. I think I am having cramping from a spot in my bowel where maybe she had a problem with the scope. Its a sharp pain. blah. hope it goes away.

Aphreal Contributor
Aphreal
Posted
  • Author

*hugs* Sorry you're having such a rough go.

You need a smart-a$$ answer for the "what DO you eat?" question. You could always respond thusly (with a big smile on your face and a cheerful voice): "Puppies! They're gluten-free."

HA! Lets all come up with a quip for the question.

hmmm.... *what DO you eat?*, "How do you think we keep our rodent problem under control?" :P

ravenwoodglass Mentor
ravenwoodglass
Posted

I hear ya, i'm having a bad day also.

Got glutened a few days ago, still fighting diarrhea and found out last night my wife is divorcing me.

It can only go up from here, RIGHT??

((((((((((((hugs))))))))))))))))))

I'm sorry you have to go through that. Just went through a divorce myself, it isn't easy.

Hope you get over the glutening soon.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

HA! Lets all come up with a quip for the question.

hmmm.... *what DO you eat?*, "How do you think we keep our rodent problem under control?" :P

:D:D:D

That would be a great reply.

I hope your mouth heals quickly. Dental stuff is no fun. Relax as much as you can and hopefully you have lots of yummy liquid and mooshy stuff on hand.

Aphreal Contributor
Aphreal
Posted
  • Author

Ive had to lay off anything crunchy because of dental issues for like a month. He extracted the biggest of the problems so when I DO heal, I hope I can go back to my carrots and gluten-free crackers.

xox

Another quip..

So what DO you eat? "Well.... I used to have 4 children"

BWAAHAHAHAAHA! *sigh*

tarnalberry Community Regular
tarnalberry
Posted

I like the "overwhelm them with the obvious" answer to "what do you eat", especially when I say I'm gluten and dairy free, and have had to eliminate a number of things for my baby's reflux.

"Oh, you know. Chicken, fish, beef, pork, eggs, carrots, zucchini, peas, bean sprouts, bananas, apples, oranges, pears, mangos, avocado, rice, corn, quinoa, millet, lentils, beans..."

(by the time I get this far, whoever asked the question is usually doing some sort of "ok, ok... I get the picture, you can stop now". and they usually look a little shamefaced for asking. :P )

i-geek Rookie
i-geek
Posted

HA! Lets all come up with a quip for the question.

hmmm.... *what DO you eat?*, "How do you think we keep our rodent problem under control?" :P

Hee... "what DO you eat?" "Oh, cardboard, tree bark, mushrooms I find in the yard- sometimes things go funny colors when I eat those..."

i-geek Rookie
i-geek
Posted

I hear ya, i'm having a bad day also.

Got glutened a few days ago, still fighting diarrhea and found out last night my wife is divorcing me.

It can only go up from here, RIGHT??

Oh no. So sorry to hear that you're also having a rough go. :(

Aphreal Contributor
Aphreal
Posted
  • Author

Hee... "what DO you eat?" "Oh, cardboard, tree bark, mushrooms I find in the yard- sometimes things go funny colors when I eat those..."

HAHAHA I hope you have flowers in your hair when you are able to use that one.:)

Aphreal Contributor
Aphreal
Posted
  • Author

I like the "overwhelm them with the obvious" answer to "what do you eat", especially when I say I'm gluten and dairy free, and have had to eliminate a number of things for my baby's reflux.

"Oh, you know. Chicken, fish, beef, pork, eggs, carrots, zucchini, peas, bean sprouts, bananas, apples, oranges, pears, mangos, avocado, rice, corn, quinoa, millet, lentils, beans..."

(by the time I get this far, whoever asked the question is usually doing some sort of "ok, ok... I get the picture, you can stop now". and they usually look a little shamefaced for asking. :P )

From one Tiff to another, I am hankerin for some chocolate. Oh and I love the idea of listing everything in nauseating detail.... and keep talking if they try to walk away. I mean they DID ask, right? :)

notme Experienced
notme
Posted

haha - on my first gluten-free trip out of town i brought my own breakfast: honey nut chex. and my own dish and spoon. so, in a big crowd of people in our hotel room i am munching away while everybody is discussing what i can and cannot eat. (my first "feed the freak" experience) i get done eating and take the bowl to wash it out and promptly drop it into the sink where it shatters into a million pieces. so now when anybody asks me what i can eat i tell them, "honey nut chex and broken glass" they usually shaddup after that :D:D:D

Jestgar Rising Star
Jestgar
Posted

I hear ya, i'm having a bad day also.

Got glutened a few days ago, still fighting diarrhea and found out last night my wife is divorcing me.

WTF?? She's so not good enough for you.

Dellers Apprentice
Dellers
Posted

Big huggs we all have bad days then mother nature decides to kick us while we are down.

GFinDC Veteran
GFinDC
Posted

@tehjrow

Sorry tehjrow, that's a hard one to take. I got's 2 ex's myself. I talk to one on a fairly regular basis. She got re-married, to a stupid brain surgeon, why the heck would she want that? Silly 'ooman. But what the hey, life goes on and they are a happy family and I am happy for them. Took me a while to get over it though. We went to a mediator rather than lawyers. Might help in your case I don't know. Mediators can help both sides through the process, versus lawyers being a one sided, kind of adversarial thing.

@Apreal

Ya'al with your what do I eat lines are reminding me of the dead baby jokes. Ewww!

I heard yesterday that a tornado hit the little burg 2 of my sisters live in, The Plains, Ohio. Both of them are ok and their homes are barely scratched. Thank god for sparing them!

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    2. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

      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...
    3. trents
      - 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?

      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...
    4. catnapt
      - 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?

      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...
    5. trents
      - 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?

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

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    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

    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

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

      By trents · Posted

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

      By catnapt · Posted

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

      By trents · Posted

      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).
×
×
  • 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.