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

You Can't Hurry It.


bartfull

Recommended Posts

bartfull Rising Star

Lately I have seen a lot of posts from newbies looking for a way to go quickly. Some want to get past the withdrawal phase, some want to eliminate other foods that they may potentially have intolerances to, even though at first we can get sick from eating just about anything. Some are impatient and want to feel better immediately. Some want to start eating in restaurants right away even though the chance of CC is so much greater when we let others prepare our food. Some want to get back to feeling "normal" in a matter of days.  

 

It doesn't work that way. We need to eliminate gluten, wait for the withdrawal to pass, take probiotics and possibly digestive enzymes, and WAIT. After a while (perhaps three months or so), if we aren't feeling better, we need to do an elimination diet. Skin prick tests are not all that reliable and besides, they are for ALLERGIES, not intolerances. As far as I know, there ARE no tests for intolerances.

 

An elimination diet seems to take forever, but what else do we have if not time? And an elimination diet WILL eventually ferret out our other problem foods if we have them. If we try to take shortcuts all we are doing is prolonging the agony and increasing the confusion.

 

It took us a long time to get as sick as we were and it will take a long time to heal. But if we're patient and keep in mind that we are on the right track we can celebrate every little positive, and give ourselves the time we need to truly get better.


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



Celiac.com Sponsor (A8-M):



Renegade Contributor

Pretty much,

 

Oh yes I am guilty of this as well, from now I am just taking it one day at a time and taking probiotics,vitamins and adding things slowly to see what works and what doesn't while making sure I have very good food and lots of vegetable, I also started making sure what I take is not cross contaminated and stared calling companies.

Adalaide Mentor

Very good advice and reminding. Especially about not needlessly avoiding healthy foods that are not necessarily a problem. I personally think it is positively silly and possibly dangerous to start eliminating healthy foods from a diet without first giving your body time to begin to heal. This can lead to deficiencies that are completely unnecessary and could lead to additional symptoms that you didn't previously have. (This happened to me, although in my case the removal of certain foods from my diet was based on sound medical advice and must be strictly adhered to.) 

 

It can also take those first months to work out how to avoid CC in your own kitchen. Yes, I know you think you have a handle on avoiding CC and reading labels and no one is saying that anyone is doing anything wrong. Just... it takes time to adjust and hindsight is 20/20. Many of us thought we had a perfectly good handle on things in the beginning only to look back a year later and realize that if we went back to how we were doing things those first months we would be horridly sick again. Plus, even if you are doing everything 100% right, your body will take time to adjust. One day you'll be up, the next you may be down. You may bounce between being regular, some C and some D for absolutely no apparent reason. These things are normal and expected. 

 

I think more people should think about things in the context of what is actually going on with their bodies rather than setting unrealistic timelines. When considering the sheer amount of physical damage to your intestines, think about what it takes for your body to heal from serious injury. We aren't talking bumps, bruises and scrapes. We're talking major trauma. And the damage is rarely limited just to the intestines for those who had to fight for a diagnosis. The damage has spread to many other parts of the body, and only time will allow us to heal.

Gemini Experienced

Good post, Bartie!  Very, very true and I couldn't have said it better. There is no fast track to wellness with this disease so you have to go about your regular life as best you can and deal with it.  At some point, down the road, you will realize that things are getting much, much better.  :)

notme Experienced

good point, barty :)  i like this thread - 

 

in the beginning, *everything* is going to be new - lolz i probably would cringe reading some of my first posts!  i really see it as more of a "congratulations, you've got (celiac, ngci) so just eat gluten-free!  viola!  you're cured - see ya!" doctors' failure to be educated/educate their patients with gluten problems.  

 

when i first explained to my husband about cc, i thought he was going to have me committed :D

notme Experienced

lolz, gem, great minds!  :)

Adalaide Mentor

when i first explained to my husband about cc, i thought he was going to have me committed :D

 

There could still be plenty of reasons to do so.  :P


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

 

when i first explained to my husband about cc, i thought he was going to have me committed :D

 

I still get that look when I try to go into too much detail with anyone about this diet and how to stay well. Get the white coat, people...and the large net!  ;)

GottaSki Mentor

I still get that look when I try to go into too much detail with anyone about this diet and how to stay well. Get the white coat, people...and the large net!  ;)

 

Part of what makes us such great advocates....by the time we have "the speech" down....we usually know more than 99.9% of the health care folks we encounter.  Very much hope to see the day when every MD is as familiar as us regarding the details of Celiac Disease and NCGS. 

 

Ever hopeful...but prepared to continue educating until that day comes.

Adalaide Mentor

I still get that look when I try to go into too much detail with anyone about this diet and how to stay well. Get the white coat, people...and the large net!  ;)

 

I get that look too. I call it the self-hugging coat though. It sounds nicer. 

Renegade Contributor

Part of what makes us such great advocates....by the time we have "the speech" down....we usually know more than 99.9% of the health care folks we encounter.  Very much hope to see the day when every MD is as familiar as us regarding the details of Celiac Disease and NCGS. 

 

Ever hopeful...but prepared to continue educating until that day comes.

So true, I had a big wart that would impair my hand completely has it was incredibly painful and when I went to get a medical paper to prove that I couldnt use it (because in our medical field, you arent sick unless a doctor says so) she siad she coudlnt do it. I told her I was using apple cider vinegar to treat it and she look at me like i was retarded, asking me where I got my idea from, and I said the internet.

 

So i didnt liste to her advices where she wanted me to stop doing what i was doing and take an appointment to get it burned and it would take months, so 2 months later i came for something else and showed her how completley gone it was, and she was surprised, she didn't believe it would have work but it did.

1desperateladysaved Proficient

Yes, we do want to heal last week!  Who can blame us?

 

I do think there are ways to optimize healing which of coarse many of us would like to use.  This could just be avoiding junk foods to consuming more vegetables.  I also use sunshine, exercise, and supplements.  One can never know how much good they do perhaps.  I have stories though.

 

Sometimes I think I am a little strange, but who could blame me?

dilettantesteph Collaborator

In hindsight, I wish that I had known about the possibility of super sensitivity being an issue.  I would have to liked to heal faster by having a diet heavy in fruit, vegetables and unprocessed meats.  I would have rather left processed foods and restaurants to try after healing.  I think that would have speeded things up.  Anyone could benefit from fewer junk foods, in my opinion.

AlwaysLearning Collaborator

Big thanks to everyone who posts on this forum. It was a huge help to me, not just to point me in the right direction of gluten as a problem that doctors all missed, but also in helping me to avoid making mistakes in the beginning ... though the first few months were still an accidental glutening mine field. 

nvsmom Community Regular

Good post. You know, one year in and I still want to feel better right now. LOL

I really is hard to be patient at first. Once you know what is wrong, I think most of us want to feel better fast, with any edge that will help. Most of us settle in for the long haul within a few weeks or months though.

IrishHeart Veteran

Ah yes,....the healing process. It’s the mother of all exercises in patience.

It is so damn slow sometimes and it is not always a straight line and we all (understandably) become frustrated and discouraged. Believe me, I get it. I’ve cried enough tears to float the Queen Mary. I was so sick that I thought death would be easier, but I refused to believe I could never get well.

I would ask my hubs every night the first year:  "it will be better tomorrow, right?" and every night he would say "yes babe".

and I would ask Gemini the same thing ...often!....and she would say "just hang in there, Irish". She was right.

I have been at this “healing” for 2 years and 9 months. Trying to reverse a lifetime of malabsorption and what it does to the bones, muscles, joints, brain, the other organs, even the spirit….well, it takes time.

This is what my doctor tells me: "Every year is a healing year". He speaks the truth. I am not the sick woman I was

just 3 years ago. I may actually be the healthiest I have ever been in my life (even if I still have pain issues)

Patience and time. Healing happens, I promise.

Great idea for a post, Barty!! xx 

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. - 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?

    2. - 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?

    3. - 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?

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

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

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

      Accuracy of testing concerns

  • 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):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.