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

Healing Time?


njbeachbum

Recommended Posts

njbeachbum Explorer

OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.


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



Celiac.com Sponsor (A8-M):



VioletBlue Contributor

Hi and welcome. I think the consensus is 18 months for most people to heal years of damage. Aren't you so glad you asked :lol:

Sorry, couldn't resist. It does tend to take awhile because there are usually secondary issues like vitamin and mineral deficiencies and things like arthritis and what not caused by the Celiac. I saw a difference in the gastro issues after a few weeks, but building up my iron and B vitamin reserves took nearly a year.

Once I went gluten-free I realized there were other allergies at work and I've been weeding stuff out of my diet ever since. The neurological or psychological issues that resulted from the gluten have taken longer to resolve, and after a year gluten free most of those are starting to fade. I still have bad days there, but they're much fewer and farther between. I also have nails that don't break and splinter now.

The way I look at it, my diet before was providing a constant source of gluten, meal after meal, day after day. Once I cut all the gluten out I was able to figure out what else was bothering me because I don't eat most other things daily. It was like turning off the white noise machine and suddenly being able to hear everything else my body was saying about what I was feeding it.

OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.

amz Newbie

i had the exact querry a week ago too and i know all our bodies will take different lengths of times to heal particular things and in particular ways, I just want to let you know that going gluten free will def see positive results. I've bee gluten free now for only 3 and half weeks and the past week my gastro symptons have really eased off and more or less stablised (no more 'D', running to the loo 6 times a day, stomach aches) I'm touching wood as its too good to be true but i can honestly say i'm feeling like a new person. Before my diagnosis, I was off work feelin totally burnt out and had suffered for 6 months if not more but i was still eating gluten (unknown to be the damage it was doing). Going gluten free will def help your symptons and your villi will heal in time. It may just take a bit longer if you've suffered for a few years but it'll happen. My best wishes

njbeachbum Explorer

Thanks so much for your feedback and for sharing your experiences.

I wanted to bump up this thread to see if anyone else has some comments for me. I still haven't noticed much of a change and i'm getting impatient. however, it is still just short of 2 weeks, so i need to be more patient.

nikki-uk Enthusiast
OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.

Gotta say - for my hubby it was a good 6 months before he see any improvement AND then some.

Of course there are some that feel instantly better - but not all I'm afraid :(

With my hubby I'm sure it's because he was a 'late diagnosed' (40 yrs) and there was ALOT of damage to undo.

Be patient!!! :)

Joe Hoffman Rookie

I was diagnosed in October and was on the diet for six weeks until they did the biopsy and it came back negative. During that time I kept waiting for the diarrhea, nausea and dry heaves, cramping and bloating to stop, but it never stopped. I was convinced the diet was not working and with the Biopsy being negative I called the Dr. that did the Biopsy and he said "Enjoy your Thanksgiving dinner with your family as you DO NOT have Celiac Disease."

So I went off the diet and within a couple of days my insides went into spasms and cramping that I can only describe as "devastating". My stomach literally sounded like two people arguing all day and all night long. There were noises coming from my stomach that sounded like a wounded animal.

That Gluten Free diet WAS working after all,,,,, I just wasn't patient enough.

When I went back to the Dr that origionally diagnosed me with Celiac, I told him what happened and he told me that the second battery of blood work had come back, and shows that irrefutably I have Celiac Disease.

So I have been back on the diet for about three weeks now and instead of going 20 to 25 times with a gallon of pure liquid coming out in one second, I'm down to 10 to 15 times a day with much smaller amounts of "oatmeal" like "D".

Also the severe cramping, bloating and abdominal pain is almost tolerable.

So YES the Gluten free diet sure works, but it's far from a miracle cure. From what I have read from some of the GREAT people on this site is "it's a process, and you have to have patience".

I hope this helps,,,,, from someone that understands what you are going through,,,,, and I apologize for being so graphic about the "D".

I hope you feel better soon.

Joe Hoffman

Lisa Mentor

I would like to add something here. Gluten is very tricky and it can hide everywhere. It would certainly expedite you healing time if you eliminate all possible exposure to gluten. This is a disease where the severity of the disease correlates with the exposure. I have found it almost impossible to be 100% successful in the beginning because there is just too much to learn with too many traps.

Stay at home and cook for yourself if possible. Keep your meals simple. Go dairy free until some healing has taken place. Make sure that your cookware is not scratched, new wooded spoons, new toaster and colander. Check your toiletries and your medications (vitamins) as they can hide hidden gluten....anything that can get into your mouth.

I recall it took me at least six months before I was comfortable to travel with confidence out of town and away from my designated stops. Two and a half years later, I consider myself in remission and life is good.

It wasn't always easy, but there is a light at the end of the tunnel.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I agree completely with what momma goose said.

I was ill for about 20 years before being diagnosed. I noticed small changes at the beginning of the diet, but it was more like a rollercoaster than a consistant healing.

It took me a good 2 years before I considered myself to be in remission. I sort of turned a corner after about 18 months. Hang in there--it's worth it :)

njbeachbum Explorer

thanks guys! so just to respond to concerns, i'm fairly certain that i've eliminated all gluten from my surroundings. but hey, it's only been two weeks. i have prepared all meals for myself at home, including lunch at work and dinner. i've bought tons of gluten free snacks and have been munching happily on carrots and apples like a rabbit (which is hilarious b/c i am thin and pretty fit, and everyone at work is looking at me funny, hahaha, like why is he dieting???)

as far as home.... i've checked ALL products for hidden sources... i used paul mitchell tea tree shampoo and that had wheat in it, so i tossed it. all toothpastes, lotions, deodorants, soaps and shampoos currently being used are safe. i take centrum and nature's made vitamins which are both gluten free. i take nexium and pentasa, and both are gluten free. i have purchased new wooden spoons and a new saucepan for cooking my cream of rice cereal in the morning. i have a toaster oven and i've removed the rack and scrubbed the poop out of it with brillo. i have NOT however, purchased all new pots and pans and colanders. i've cleaned all pretty thoroughly though, and i didn't cook a lot of gluteny items in the previously, except for the one saucepan that i did replace. my frying pans had been mainly used for eggs in the morning and to sautee chicken and pork chops, which i am still currently doing. any stainless steel pans i feel safe with as long as i've cleaned them thoroughly with brillo. i doubt that any contamination from those sources would be hindering my progress. i think it's just that i have 14 years + of damage and my villi are finally awakening.

i have been using dairy sparingly, but i've thought about eliminating it for a while. but then i can't have my morning coffee with coffee mate!!!! lol. there are few joys that i have left with removing gluten and my coffee is one of them. and i just got the grainless baker gluten-free anisette biscotti..... SOOO yummy to dip in my coffee. just a side note.

thanks again for all of your stories. i am confident that this will become a very "doable" way of life. i'm traveling to key west for new year though, and that will be my first challenge away from home. i'm bringing lots of larabars and other gluten-free treats, but i think i'll be safe with grilled seafood and meats and plain salads.

:) joe

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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.