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

Done With This


varthurs

Recommended Posts

varthurs Apprentice

This is a vent, feel sorry for myself post.

I was diagnosed with GERD, Barretts Esophagus and celiac disease about 6 weeks ago and went gluten and dairy free.

I started to feel better until last week when my Mom passed away after a long battle with cancer. it was so difficult to manage this diet with all of the company from out of town, being stressed, pasta dinners made by well meaning people, etc. I thought I did ok until Tuesday when I went to the diner. I asked the waitress if they had a gluten free menu and she said "you mean some kind of lunch specials?" I should have RAN!! Instead, I went "safe" and ordered an egg salad platter (on lettuce). It had coleslaw, egg salad and potato salad. I thought it was ok. I have been sick since. Woke up Wednesday morning violently ill and spent the whole day in the bathroom. Then I decided since I felt so disgusting anyway, that i'd just eat the orange gel rings (gluten free, but chocolate has lactose). Now it's Friday night and I am a mess. My stomach is crampy and bloated, I am in a fog and totally depressed. Now of course, I can't figure out if this is all stress related to my Mom or if it is a combination of both. Anyone want to share how long their sickness from being glutened lasts? This is my first time.

Anyway, this sucks and I am so mad that I have this stupid disease. It's making my life miserable. To make matters worse, I am going through the death of my Mom and have NO source of comfort. Can't eat, can't smoke (quit 2 months ago) and can't drink alcohol (Barrett's). UGH!!!!!

Thanks for the vent. It's impossible to explain to other people. I feel like they are all sick of hearing me talk about this. I am sick of listening to me.


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

I am so very sorry to hear of your mothers passing. My heart goes out to you!

As far as how long a glutening can last. It takes me at least 2 weeks to feel better.

I get that you can't drink or smoke. But, you can eat..If you can have potatoes, cut them up and fry them and make french fries. They always make me feel better. Sometimes we need to find new "comfort" foods.

Hang in there. Give it some time. It takes awhile for the body to stop having the autoimmune reaction to the gluten that you ate.

sce2012 Newbie

I'm so very sorry! I was diagnosed two months ago, right after the death of a family member, and it is a lot to go through all at once. I don't know that I have any good advice, as I am still trying to figure all this stuff out too, but I do hope things settle down for you.

rosetapper23 Explorer

First, I am so very, very sorry about your mom's passing. How difficult a time this must be for you!

The times when people try to "help" or "celebrate" something with you can be the worst. Even people who know how to prepare meals gluten free can make mistakes because of contamination--it's hard to prepare gluten-free meals in a kitchen where wheat flour abounds. The egg salad may have had paprika in it, which has gotten me a number of times (it oftentimes contains an anti-caking agent that contains gluten). Unfortunately, when gluten is combined with paprika, a pepper, the ill effects can be magnified. Even so, for me the worst of the "glutenings" pass after 48-72 hours. However, I usually suffer from nutritional deficiencies after a month or two. But, since you've just started the gluten-free diet, that's probably not a concern for you. I would expect that you'll feel a lot better shortly--and because symptoms can include depression, perhaps you'll also feel cheerier, too.

Again, my condolences...and I wish you brighter days.

AVR1962 Collaborator

Very sorry to hear about your mother and what you are dealing with right now. It's been said on here before that celiac can be triggered by stress and I think that is what happened in my case. I lost a grandparent and all that came about before his death was very hard to deal with and I became very ill like you have mentioned here.

It sounds to me like you ate dairy that made you sick rather than gluten unless there was wheat in the orange rings. Dairy issues should resolve themselves in a few days. Gluten, at least for me in the beginning took a few weeks.....a year on a gluten-free diet I don't have as severe reaction and it is only a matter of days.

I too found it hard at first, real struggled with the diet, felt my choices were limited but once I thought of what I could have rather than what I couldn't have it helped alot. If it is not veggies or grilled meats, I don't eat it when I am away from home. We shouod be able to rely on restaurant staff to help us but I have learned that you still have to be very careful, be very specific and ask direct questions.

My thoughts are with you!

Skylark Collaborator

I'm sorry to hear about your mom. That must be hard.

It's miserable to be stressed out, glutened, and deprived of things you find comforting. And the glutening always messes with my head and makes me all the more miserable. I get more sensitive to stress. I hope you get over the gluten symptoms soon. You asked how long it can last - my stomach will be "off" and I'll be tired and anxious for 3-4 days after gluten.

dani nero Community Regular

Sorry for your loss :-(

Yes we are a little unfortunate and tend to feel bad for ourselves, not because we have a disease, but because it's been around for a long time and the world is still clueless about it.. putting gluten in everything and then acting like we're something strange because we don't eat it, when in fact the whole world is strange because 90% of the population eats whatever packaged foods without even knowing what's in it!

We all understand your frustration here however and won't get tired of your venting :-) Vent all you want!

My gluten symptoms last for more than three weeks by the way.


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



Celiac.com Sponsor (A8-M):



Di2011 Enthusiast

This is a vent, feel sorry for myself post.

I was diagnosed with GERD, Barretts Esophagus and celiac disease about 6 weeks ago and went gluten and dairy free.

I started to feel better until last week when my Mom passed away after a long battle with cancer.

What sort of cancer did your mother suffer? Do you know of your family genetic/medical history wrt gluten intolerance?

My heart goes out to you. In the coming days I'm going to ask you a thousand questions so you can get both focused and feel like gluten-free doesn't take over your emotional space. I, and many others have been there. Your mums death is terrible. I don't know how I will be when that happens. So from this moment I am going to concentrate on you. If you are up for answering my questions then maybe I can help you when your mind needs to be thinking of another. Kinda like someone looking after you when you can't.

The answers you give are for me and in no way self indulgent on your part.

What sort of work do you do? Or are you a mother? What are your household circumstances? How are your finances (I'm low income single mum so gluten free has been 'interesting' financially but I've managed to keep it cheap).

Tell me anything about yourself. What are you into? TV, music, movies, reading, hanging out with friends, craft, cooking, something random?

What do you when you are bored?

Where do you live ? What is the weather/climate like? Is a big town/city or rural? How are your services (medical, shopping, internet) in your area?

varthurs Apprentice

Thank you, all. It's nice to know you can come on here and get it all out. I actually woke up this morning feeling a bit better physically. It will be quite some time before I get lazy in the restaurant department.

kwylee Apprentice

I've lost my Mom as well and I know exactly what you're feeling. Even though I hadn't yet stumbled upon my gluten & dairy issue at that time, it affected me not only emotionally but physically for a couple weeks. Sounds like you have more than your share of stress right now and that can't be making it easy for your system, especially so close to having been diagnosed and starting a restrictive way of eating. Please try to take care of yourself right now, proper foods, lots of fresh water, deep breaths. That's what our Mom's would really want.

Bubba's Mom Enthusiast

I'm so sorry for your loss. The loss of a parent is such a stressful thing to go through.

It's so easy to slip up when your thoughts aren't focused 100% on what you're eating.

Your side effects may be from dairy rather than gluten? The slaw dressing and chocolate may be what got you? The effects usually wear off faster than gluten.

Find something that gets your mind off of things a bit? Crank up your favorite music, watch a funny movie, or just take a nap. Whatever makes you feel better.

MitziG Enthusiast

I am so sorry to hear about your mom, and being miserably sick while grieving just makes things even more miserable.

I have found a teaspoon of apple cider vinegar (must be organic, with the mother floating in it- I use Braggs) provides almost instant relief of the cramping and bloating when I get glutened. I know a lot of people use it successfully with acid reflux. You may want to google if it is safe with Barretts Esophagus though. Gluten Ease capsules also provide some relief, as well as soaking in a hot bath with Epsom Salts. Constipation after getting glutened is common, when my daughter and I get glutened we start Miralax the next day and keep it up for at least 10 days or we get very painfully backed up.

Hope you get some relief from your physical pain. My heart goes out to you!

MitziG Enthusiast

Oh, I forgot- dissolve the ACV in a glass of water. Don't drink it staright!

dilettantesteph Collaborator

I am so sorry for your loss. I lost my mom to cancer when she was 48 and I was 21. I think I didn't grieve enough when it happened and it hit me hard months later. It sounds to me like a combination of the two, grief and glutening. I hope you feel better.

IrishHeart Veteran

My sympathy on the loss of your Mom. I suspect your were hit by too much mayo (and possibly some CC issue), maybe the dairy and frankly, your whole body is just stressed horribly by your loss. My heart goes out to you.

My Dad's death was the last trigger that put me over the edge into full blown Celiac. Grieving his loss and battling dozens of bizarre and debilitating symptoms for the following 3 years were more than I could stand sometimes. Stress is a major factor in keeping the immune system taxed. No question about it.

You can and will master the gluten-free diet! Do not despair.

Right now, though, you are grieving and it will take some time.

Be good to yourself, hon and try to eat nourishing foods and get some rest. Glutening "fall-out" varies from person to person but the best thing you can do is drink a lot of water and ride it out.

Hope you feel better today.

All good wishes,

IH

Gemini Experienced

This is a vent, feel sorry for myself post.

I was diagnosed with GERD, Barretts Esophagus and celiac disease about 6 weeks ago and went gluten and dairy free.

I started to feel better until last week when my Mom passed away after a long battle with cancer. it was so difficult to manage this diet with all of the company from out of town, being stressed, pasta dinners made by well meaning people, etc. I thought I did ok until Tuesday when I went to the diner. I asked the waitress if they had a gluten free menu and she said "you mean some kind of lunch specials?" I should have RAN!! Instead, I went "safe" and ordered an egg salad platter (on lettuce). It had coleslaw, egg salad and potato salad. I thought it was ok. I have been sick since. Woke up Wednesday morning violently ill and spent the whole day in the bathroom. Then I decided since I felt so disgusting anyway, that i'd just eat the orange gel rings (gluten free, but chocolate has lactose). Now it's Friday night and I am a mess. My stomach is crampy and bloated, I am in a fog and totally depressed. Now of course, I can't figure out if this is all stress related to my Mom or if it is a combination of both. Anyone want to share how long their sickness from being glutened lasts? This is my first time.

Anyway, this sucks and I am so mad that I have this stupid disease. It's making my life miserable. To make matters worse, I am going through the death of my Mom and have NO source of comfort. Can't eat, can't smoke (quit 2 months ago) and can't drink alcohol (Barrett's). UGH!!!!!

Thanks for the vent. It's impossible to explain to other people. I feel like they are all sick of hearing me talk about this. I am sick of listening to me.

You know, I am almost having an anxiety attack reading this post! Your Mum has passed away, you cannot drink, you quit smoking AND you have been glutened?!?!? :blink: :blink: If you were here, I'd give ya a BIG hug!

My deepest condolences on your Mother's loss because that must be a shock when it happens. I haven't had that happen yet but everyone goes through it so you are not alone in your grief.

I will make a tiny suggestion ....just a suggestion if things get too rough. I found that Nicorette Fast Melts work really well for calming effect when stressed, for former smokers. You may have gone 2 months but when stress hits like a brick, you can revert to old habits. If you want some relief, try them as they calm a person down quite well. I can't imagine what it must be like for you now except I smoked and I know how hard it can be. Coupled with everything else, it can be overwhelming. Nicorette offers a coupon for them on their website.

Find the time to do some things you enjoy and breathe deep. And remember....venting is good! :D

ncallier Newbie

My sympathy on the loss of your Mom. I suspect your were hit by too much mayo (and possibly some CC issue), maybe the dairy and frankly, your whole body is just stressed horribly by your loss. My heart goes out to you.

My Dad's death was the last trigger that put me over the edge into full blown Celiac. Grieving his loss and battling dozens of bizarre and debilitating symptoms for the following 3 years were more than I could stand sometimes. Stress is a major factor in keeping the immune system taxed. No question about it.

You can and will master the gluten-free diet! Do not despair.

Right now, though, you are grieving and it will take some time.

Be good to yourself, hon and try to eat nourishing foods and get some rest. Glutening "fall-out" varies from person to person but the best thing you can do is drink a lot of water and ride it out.

Hope you feel better today.

All good wishes,

IH

I am truly sorry for all of you who have lost a loved one--whether before or after learning of your celiac diagnosis! I know that this is a part of life, but celiac disease surely doesn't make it any easier. I recently lost my grandmother on the heels of being diagnosed with celiac disease. I have a big family that gathered at my mother's home for several days of mourning, etc. We live in a small southern town where friends and church members take lots of food etc. as offerings. My sister and I took care of the kitchen and the food. Although I didn't eat anything that I knew had gluten, I may have been cross contaminated. Also, since I don't know much yet, I wonder whether I was glutened from simply handling the food and the dirty dishes. Any thoughts???

I, too, hope you feel better each and every day!

scaredblossom Rookie

I am so sorry for your loss!! :( hugs and prayers sent your way!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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)

  • Upcoming Events

  • Posts

    • trents
      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
      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
      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
      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
      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.