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

1 Year & Just Not Getting It

bknutson

Recommended Posts

bknutson Apprentice
bknutson
Posted
:( Just not doing well. I guess I should have stayed on this forum and let you guys help me and lean on the support. I just always felt like you would think I was a stupid old woman. I have done someting wrong all along and started getting well and then not. It has been one step forward two steps back it seems. Really it has probably been two forward and one back but it doesnt feel like that. There have been a couple of you that helped me so much right at first and I love you so much for it. You are the best people and it is like everyone on her becomes on big family. This is the place to be if we all want to get well. Thankyou all. Barb
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BRUMI1968 Collaborator
BRUMI1968
Posted

Barb,

I'm new, so I'll accept your thanks only in the broad sense of being part of the board. I find the folks here have helped me as well. There are so many hidden sources of gluten - and there are so many symptoms and setbacks - it's nice to hear from real live human beings who know so much more and so much more intimately than doctors.

I'm sorry you're not feeling well. I know that in the two months since I've gone gluten-free, I've gotten certain symptoms back (that I had lost when I quit wheat two years ago), some new ones, and many others have gone. But it is like playing chess - sometimes you give up a man - hopefully you end up taking the table in the end. That's a silly analogy, sorry.

One thing this Celiac definitely does - it forces you to really pay attention to your body - what works for you, what doesn't work for you. It takes a lot of experimentation. I think it takes a lot of letting go of what conventional wisdom has long told us. Often those "milk does a body good" or "an apple a day keeps the doctor away" have less than altruistic beginnings.

Anyway, stick with it. Hope you feel better. It seems that most folks suggest first quitting dairy, soy, and corn, to see if it is secondary food intolerances. I'm glad you're back, and I'm sure you're not a stupid old woman.

rinne Apprentice
rinne
Posted

I'm sorry to hear that you aren't feeling well, I often feel that I am taking two steps forward and sliding back one or sometimes that I'm taking one step forward and two steps back. :(

Please don't put yourself down for struggling with this.

AndreaB Contributor
AndreaB
Posted

Don't be too hard on yourself. There is a wealth of knowledge to learn and it's available on this board. Keep you chin up and go through whether you are accidentally getting glutened...if not then maybe check out other allergies like dairy and soy.

taz sharratt Enthusiast
taz sharratt
Posted
:( Just not doing well. I guess I should have stayed on this forum and let you guys help me and lean on the support. I just always felt like you would think I was a stupid old woman. I have done someting wrong all along and started getting well and then not. It has been one step forward two steps back it seems. Really it has probably been two forward and one back but it doesnt feel like that. There have been a couple of you that helped me so much right at first and I love you so much for it. You are the best people and it is like everyone on her becomes on big family. This is the place to be if we all want to get well. Thankyou all. Barb

i dont think anyone here ould think of you as a stupid old woman. were all learning new things every single day and thats what this board is here for, dont worry. half the time i feel like im not only takeing steps backward but im bungyjumping of a cliff, its hard but help is here on the board. (((( hugs)))

evie Rookie
evie
Posted
:( Just not doing well. I guess I should have stayed on this forum and let you guys help me and lean on the support. I just always felt like you would think I was a stupid old woman. I have done someting wrong all along and started getting well and then not. It has been one step forward two steps back it seems. Really it has probably been two forward and one back but it doesnt feel like that. There have been a couple of you that helped me so much right at first and I love you so much for it. You are the best people and it is like everyone on her becomes on big family. This is the place to be if we all want to get well. Thankyou all. Barb

:D Hello, join the crowd, I have not been here long either but I sure have learned a lot from these buddies here on the forum. I too have thought smooth sailing just to have a back set most recently from eating wrong kind of choclate, just got too brave; had not been eating it at all. Was mainly eating the basics of meat, vegs, fruit, nuts and some alternate cereals, just recently a bit of baking 2 times a week. Some can't handle any grains for cereal or baking, may come on me too but not yet. I lost 25lbs over 3 mos. but am now gaing a bit back but my strength level seems to lag more than I want, it is summer and so much to do/ garden & flowers & etc such as walk around town. We just have to learn from others posts and go at our own level & you never get to old to learn. do not think any one is older than i am, will have my 78th BD 9/17/06 and we will celebrate our 60th anniversary 7/13/06. Hubby has helped me so much last 6 months, but I need to get better so I can do same for him not too far away from now. Just hang in there & let us know any specifics we can help you with?!? :(:blink:;) evie

Ursa Major Collaborator
Ursa Major
Posted

You know, Barb, lacking knowledge and being stupid are two entirely different things. If you don't know something, and you ask questions so you can learn how to handle this complex cf diet to get well, I personally would think you are very SMART! Because having somebody else share their knowledge is the best and easiest way to learn.

So, ask away, learn, and remember: There is no such thing as a stupid question!

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

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted

DItto the above...no one will think you are stupid...Celiac can be a bewildering disease and we only learn by reading and asking questions.....stick around.

Are you quite sure you've removed all gluten? Have you developed - that you can tell - other food intolerances? Might you have a dairy intolerance? I remember someone here recorded her entire food intake for people to analyze - maybe you could do that?

Archived

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

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


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    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

    • 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.