How long to feel better?

[42yroldceliac]

I was just recently diagnosed with Celiac Disease at the age of 42 after years of stomach pain and other various symptoms.  I encouraged my mom to get tested after my diagnosis and she also tested positive for Celiac.  Pretty crazy! I have now been on a strict gluten free diet for 3 weeks, but can’t say that I feel any better.  The only change I’ve noticed is a rash that I’ve had on my hand for years has improved (but has not gone away), and I seem to have less acne than before.  How long did it take for you to notice an improvement with your GI symptoms?

[Scott Adams]

 For some people it can take up to a couple of years to recover, it just depends on how much damage was done to their intestines and how sensitive they are. Most celiacs don’t have symptoms and it sounds like you might be in that category. It’s important to stay gluten-free so you don’t increase your risk of getting additional auto immune diseases, and potentially worse things like lymphoma. Also, any other of your first degree relatives should be screened as well.

[GFinDC]

Hi 42, Welcome to the forum!

I started noticing changes within a week.  But it took me a good 6 months to eliminate all gluten from my diet.  I made a lot of mistakes when I first went gluten-free.

Looking back I would have been better off to adopt a whole foods, unprocessed foods diet right away.  I spent a lot of time reading food labels in the store.   Mostly on processed foods.  But I could of eaten things like meats, nuts, eggs and veggies that are naturally gluten-free instead.  I also could have given up all dairy and oats right away and avoided the symptoms those created.

You should have had your vitamin and mineral levels checked by now.  Celiac causes malabsorptoin so we are sometimes low on critical vitamins and minerals our bodies need to function.  Those deficiencies will tend to get better in time with healing.  But in the early days it is not a bad idea to supplement them.

I had gut spasms for the first 6 weeks for going gluten-free.  But my C and D got somewhat better over several months.

Edited August 17, 2019 by GFinDC

[cyclinglady]

I have read that the lining in the small intestine can heal within three weeks, but no one actually heals that fast at least from comments based on this forum.  Why?  The learning curve for the gluten free diet is steep.  Mistakes are made and set backs occur.  Patients are advised to simply go gluten free and many trade a junky Standard American diet for a gluten free version of the junky Standard American diet.  A diet full of processed junk food can be hard to digest when there is intestinal damage.  Celiac disease is also systemic and those areas (like nerves) take longer to heal.  

I wish someone had took me to consume simple ingredient non-processed foods to help speed aid healing.  No worrying about reading labels at all.  

You can master the diet and you can feel well!  It just takes time.  When you have been sick, you just want to feel better fast.  Be patient and take one day at a time.  Do your best to research and learn how to keep  safe in your own kitchen. You can google lots of tips or browse through this forum.  

Do not eat out until you feel better or see improvement.  Best to prepare or oversee food preparation (like from a family member) to insure mistakes are not made.  Later take risks.  Remember that a gluten exposure triggers an autoimmune reaction.  It is not like an intolerance where you eat something, but in a day or so, you can feel better.  Gluten ramps  up your immune system.  Your body will decide when it will calm down and that could be weeks or months.    So, you can see why accidental repeated gluten exposures must be avoided.  

Work with your mom.  It can be harder for an older person to make dietary changes.  I know because I am old!  ?

I wish you a speedy recovery!  

 

 

 

[42yroldceliac]

5 minutes ago, cyclinglady said:

I have read that the lining in the small intestine can heal within three weeks, but no one actually heals that fast at least from comments based on this forum.  Why?  The learning curve for the gluten free diet is steep.  Mistakes are made and set backs occur.  Patients are advised to simply go gluten free and many trade a junky Standard American diet for a gluten free version of the junky Standard American diet.  A diet full of processed junk food can be hard to digest when there is intestinal damage.  Celiac disease is also systemic and those areas (like nerves) take longer to heal.  

I wish someone had took me to consume simple ingredient non-processed foods to help speed aid healing.  No worrying about reading labels at all.  

You can master the diet and you can feel well!  It just takes time.  When you have been sick, you just want to feel better fast.  Be patient and take one day at a time.  Do your best to research and learn how to keep  safe in your own kitchen. You can google lots of tips or browse through this forum.  

Do not eat out until you feel better or see improvement.  Best to prepare or oversee food preparation (like from a family member) to insure mistakes are not made.  Later take risks.  Remember that a gluten exposure triggers an autoimmune reaction.  It is not like an intolerance where you eat something, but in a day or so, you can feel better.  Gluten ramps  up your immune system.  Your body will decide when it will calm down and that could be weeks or months.    So, you can see why accidental repeated gluten exposures must be avoided.  

Work with your mom.  It can be harder for an older person to make dietary changes.  I know because I am old!  ?

I wish you a speedy recovery!  

 

 

 

Thank you so much for your reply!  I do eat pretty well, and I did before I was diagnosed as well.  I have my own garden, and eat mostly whole foods.  I did cut out dairy as well, but now I am down to 100lbs. (I am 5’7”.) I still have constant stomach pain, and I’m concerned that there might be something else going on in addition to Celiac.  I did go on vacation the first week after I found out I had Celiac, and ate 2 meals at restaurants that were supposedly gluten free, but maybe not.  I also noticed that pine nuts I’ve been eating for the past 3 days were processed in a facility that also processes wheat.  Oops!  However, I would think I would have noticed at least a slight change in symptoms even with those minor mistakes.  I want to feel better so that I can encourage my mom to do as I do with a whole foods diet.  Maybe I just need more time.  I have a feeling I have had this for a couple decades at least.  Over the last 20 years, I’ve had an MRI for headaches, bone marrow biopsy for low blood counts, suffered with infertility, and given steroids (which I did not take) for allergic reactions, including a rash on my wrist and hands that would not go away for the past six years.  Nobody ever thought to test me for Celiac Disease.  I finally figured it out myself and asked my doctor to test me for it.  BINGO!  Uggh.  I’m hoping in the not too distant future that when an otherwise very healthy young adult presents with these symptoms, they will do a simple blood test for Celiac Disease.  

[kareng]

For me, I noticed an improvement in a few weeks.  Just an improvement. 

It can take months or years to completely heal.  Lots of reasons.

You might accidentally still be eating gluten for a while until you get it all figured out.  

Your body may still make antibodies for a few weeks until It “ catches up”.

 You may have significantly changed the amount of fiber, fat, sugar, etc by taking gluten out.  That can cause intestinal difficulties of various kinds.  

You are now eating foods with some ingredients you may not have eaten as much of before.  Things like xanthum gum used to help gluten-free baked goods stick together.  It’s in some “ regular” foods, but maybe not in the quantity you may now be consuming it. 

Dairy- Celiac damages the part of the small intestine that makes the enzyme that helps to digest lactose in dairy.  So sometimes, undigested dairy can give  some of the same issues as Celiac.  The good need is that after a few months, you can get that ability back.  More good news- not all dairy has much lactose.  Google and see what cheeses are low or no lactose.  

Edited August 17, 2019 by kareng
Looks like we posted at the same time

[kareng]

So, I was typing while you were!  ?

some of what I wrote might not apply to you.

when they did your endoscopy, did they also do a colonoscopy?  Did they find any other problems?  It’s possible to have more than just Celiac.  

 

[GFinDC]

9 minutes ago, 42yroldceliac said:

... Maybe I just need more time.  I have a feeling I have had this for a couple decades at least.  Over the last 20 years, I’ve had an MRI for headaches, bone marrow biopsy for low blood counts, suffered with infertility, and given steroids (which I did not take) for allergic reactions, including a rash on my wrist and hands that would not go away for the past six years.  Nobody ever thought to test me for Celiac Disease.  I finally figured it out myself and asked my doctor to test me for it.  BINGO!  Uggh.  I’m hoping in the not too distant future that when an otherwise very healthy young adult presents with these symptoms, they will do a simple blood test for Celiac Disease.  

Hi again 42,

You may have (DH) dermatitis herpetiformis also.  DH is a skin form of celiac disease that causes an itchy rash usually appearing symetrically on hands, elbows or knees.  The rash is cause by IgA antibodies in the skin.  They test for DH by taking a small skin sample from next to a lesion.  Only people with celiac disease get DH.  There is a section of the forum for DH that has more info.  Lots there to read on it.

[42yroldceliac]

3 minutes ago, kareng said:

So, I was typing while you were!  ?

some of what I wrote might not apply to you.

when they did your endoscopy, did they also do a colonoscopy?  Did they find any other problems?  It’s possible to have more than just Celiac.  

 

I have not even seen the GI doctor yet.  They could not get me in until the end of August, but told me over the phone to stop eating gluten.  One of the tests I had done was the Endomysial AB Scrn IgA, which has over a 99% specificity for Celiac Disease.  My TTG IgA was also high, so I guess given my symptoms they’re convinced I have it even without the endoscopy.  My mom’s EMA was positive as well, and they did not order an endoscopy.  

[42yroldceliac]

1 minute ago, GFinDC said:

Hi again 42,

You may have (DH) dermatitis herpetiformis also.  DH is a skin form of celiac disease that causes an itchy rash usually appearing symetrically on hands, elbows or knees.  The rash is cause by IgA antibodies in the skin.  They test for DH by taking a small skin sample from next to a lesion.  Only people with celiac disease get DH.  There is a section of the forum for DH that has more info.  Lots there to read on it.

Thank you!  I will check that out.  The rash has gotten considerably better since i’ve stopped eating gluten.  I also noticed that the over the counter hydrocortisone cream I used to put on it has GLUTEN in it!  

[GFinDC]

6 minutes ago, 42yroldceliac said:

Thank you!  I will check that out.  The rash has gotten considerably better since i’ve stopped eating gluten.  I also noticed that the over the counter hydrocortisone cream I used to put on it has GLUTEN in it!  

Bummer on gluteny cream!  Just to be clear, we need to avoid anything with wheat, rye or barley ingredients.  Oats are also suggested to avoid for 6 months until you are somewhat recovered and familiar with the diet and how your body reacts to bad ingredients.  A small percentage of people with celiac also react to oats, but not all do.  So it's better to eliminate them at first in case you are one that does react to them.  Then try them after you are further along.  That way if they do bother you, they aren't impeding your healing process at the beginning of the diet.

[42yroldceliac]

7 minutes ago, GFinDC said:

Bummer on gluteny cream!  Just to be clear, we need to avoid anything with wheat, rye or barley ingredients.  Oats are also suggested to avoid for 6 months until you are somewhat recovered and familiar with the diet and how your body reacts to bad ingredients.  A small percentage of people with celiac also react to oats, but not all do.  So it's better to eliminate them at first in case you are one that does react to them.  Then try them after you are further along.  That way if they do bother you, they aren't impeding your healing process at the beginning of the diet.

I had read about that with oats, so I have been avoiding them.  Thanks for the reminder, though.  I should make sure it is not in any of the non-food products I use too.  I’m guessing oats are common in creams, etc.  I am just trying not to use anything on my skin until I feel better.  Amazingly, my skin has never looked better, so I feel like I can get away with no makeup or lotion.  Now if only my stomach would feel better.  ☹️  I feel as though I’m wasting away.  

[cyclinglady]

I was pretty much GI symptom free until after my diagnosis.  Anemia was my main symptom.  Now after a gluten exposure, I get severe GI upset which can last for weeks.  This means I dread eating ANYTHING, because it hurts.  My food intolerances reappear for a while (like lactose/milk).  I usually make a big batch of mushy stew or soup and consume it for breakfast, lunch and dinner.  Anything mushy and easy to digest helps while my small intestine is being attacked.  

If you do not improve, get to a GI.  You can have more than one issue going on.  It might mean having to go back on gluten for two weeks prior to an endoscopy.  So, let’s hope the diet helps.  

[42yroldceliac]

15 hours ago, cyclinglady said:

I was pretty much GI symptom free until after my diagnosis.  Anemia was my main symptom.  Now after a gluten exposure, I get severe GI upset which can last for weeks.  This means I dread eating ANYTHING, because it hurts.  My food intolerances reappear for a while (like lactose/milk).  I usually make a big batch of mushy stew or soup and consume it for breakfast, lunch and dinner.  Anything mushy and easy to digest helps while my small intestine is being attacked.  

If you do not improve, get to a GI.  You can have more than one issue going on.  It might mean having to go back on gluten for two weeks prior to an endoscopy.  So, let’s hope the diet helps.  

15 hours ago, cyclinglady said:

I was pretty much GI symptom free until after my diagnosis.  Anemia was my main symptom.  Now after a gluten exposure, I get severe GI upset which can last for weeks.  This means I dread eating ANYTHING, because it hurts.  My food intolerances reappear for a while (like lactose/milk).  I usually make a big batch of mushy stew or soup and consume it for breakfast, lunch and dinner.  Anything mushy and easy to digest helps while my small intestine is being attacked.  

If you do not improve, get to a GI.  You can have more than one issue going on.  It might mean having to go back on gluten for two weeks prior to an endoscopy.  So, let’s hope the diet helps.  

I'm so sorry you are living through that.  It's crazy that the general perception is, "don't eat gluten and you'll be fine.". It sounds like that's usually not the case.  I have my appointment with the GI in 2 weeks.  I don't think I'm willing to go back on gluten regardless.  I have many family members with anemia and have suggested that they also get tested.  My mom is the only one that has and she was positive for Celiac.  Did your doctor recognize that Celiac Disease might be a cause of your anemia or did you figure it out?  I'm surprised my mom's doctor never mentioned it as a possibility.  

[kareng]

19 minutes ago, 42yroldceliac said:

I'm so sorry you are living through that.  It's crazy that the general perception is, "don't eat gluten and you'll be fine.". It sounds like that's usually not the case.  I have my appointment with the GI in 2 weeks.  I don't think I'm willing to go back on gluten regardless.  I have many family members with anemia and have suggested that they also get tested.  My mom is the only one that has and she was positive for Celiac.  Did your doctor recognize that Celiac Disease might be a cause of your anemia or did you figure it out?  I'm surprised my mom's doctor never mentioned it as a possibility.  

Anemia is how I got diagnosed with Celiac.  The nurse practitioner I saw for my annual Pap smear, etc appointment said - “ you are extremely anemic for no reason ( diet and no periods due to birth control).  Get tested for Celiac”.  

[42yroldceliac]

9 minutes ago, kareng said:

Anemia is how I got diagnosed with Celiac.  The nurse practitioner I saw for my annual Pap smear, etc appointment said - “ you are extremely anemic for no reason ( diet and no periods due to birth control).  Get tested for Celiac”.  

Wow!  Give that nurse practitioner a hug!  I had all the classic signs of Celiac and nobody once ever mentioned Celiac.  The same with my mom.  

[cyclinglady]

I suspect that my GI had just attended a conference and had brushed up on celiac disease but I never asked.  We switched insurance and I got a new GI.  My other doctors knew I was anemic but I have been all my life due to Thalassemia which is a genetic anemia.  I have tiny blood cells and my hemoglobin is just below range.  I also had iron-Deficiency anemia as well (ferritin = 2).  That was blamed on menstruation all my life.  I became very anemic after a few 30 day periods due to perimenopause the last year before menopause.   My GYN was recommending blood transfusions and a hysterectomy, but I refused.  

A few months later,  I went for a colonoscopy consult for a cancer screening (all my friends were getting them ?).  My anemia had improved since my periods finally stopped.  But I was still anemic.  So, you can have more than one type of anemia.  I try to tell young women not to listen to the old, “well, you must have heavy periods” statements.  Find out the root cause if you can.  

[NoGlutensToday]

Hi 42yearoldceliac,

I had undiagnosed issues with celiac for years. Tried going gluten free, but kept getting cross-contaminated. I didn't start improving until I followed the Fasano diet. If you haven't already, do look it up. It is strict, but if celiac is your problem, it will be the best way to feel better.

As was mentioned above, the acne you mention might be dermatitis herpetiformis (DH). It is something some people with celiac get. I get it if I'm glutened ... for years I thought it was cystic acne. It went away when I started following the Fasano diet.

Some people are extra sensitive to small amounts of gluten. For example, some governing bodies that test products for gluten will certify something as gluten free as long as it tests below 20 parts per million. Others will only certify if it is below 10 parts per million. And when packaged food says it is "gluten free" but isn't certified by an organization that conducts testing, you don't know what you're getting. After going on the Fasano diet I rarely eat anything processed. Mostly meats, vegetables, and fruit. It's a sacrifice, but that's what I have to do to feel good.

Sometimes other problems rear their ugly head after you start to get the celiac under control. After I started better, I discovered I have IBS. Probably due to all the damage from finding out I had celiac in my late 30s. It limits the diet even further, but again, I'll do what it takes to feel healthy again.

Do note that doctor's won't be able to verify you have celiac through their tests if you stop eating gluten beforehand. (The antibodies stop appearing when you're not getting glutened.) Most people seem to be fine with the tradeoff ... but I just wanted to make sure you know that.

Keep doing research, and when you have questions or need more info take advantage of this board. The people here are very supportive and have helped me greatly.

Best of luck in your journey!

[42yroldceliac]

4 hours ago, NoGlutensToday said:

Hi 42yearoldceliac,

I had undiagnosed issues with celiac for years. Tried going gluten free, but kept getting cross-contaminated. I didn't start improving until I followed the Fasano diet. If you haven't already, do look it up. It is strict, but if celiac is your problem, it will be the best way to feel better.

As was mentioned above, the acne you mention might be dermatitis herpetiformis (DH). It is something some people with celiac get. I get it if I'm glutened ... for years I thought it was cystic acne. It went away when I started following the Fasano diet.

Some people are extra sensitive to small amounts of gluten. For example, some governing bodies that test products for gluten will certify something as gluten free as long as it tests below 20 parts per million. Others will only certify if it is below 10 parts per million. And when packaged food says it is "gluten free" but isn't certified by an organization that conducts testing, you don't know what you're getting. After going on the Fasano diet I rarely eat anything processed. Mostly meats, vegetables, and fruit. It's a sacrifice, but that's what I have to do to feel good.

Sometimes other problems rear their ugly head after you start to get the celiac under control. After I started better, I discovered I have IBS. Probably due to all the damage from finding out I had celiac in my late 30s. It limits the diet even further, but again, I'll do what it takes to feel healthy again.

Do note that doctor's won't be able to verify you have celiac through their tests if you stop eating gluten beforehand. (The antibodies stop appearing when you're not getting glutened.) Most people seem to be fine with the tradeoff ... but I just wanted to make sure you know that.

Keep doing research, and when you have questions or need more info take advantage of this board. The people here are very supportive and have helped me greatly.

Best of luck in your journey!

Thanks so much!  I will look up the Fasano diet.  It might be what I need.  I had two really good days, and now tonight I am not feeling well again.  I might have to try cutting out all processed foods.  

[42yroldceliac]

I just wanted to give an update.  I am feeling much better now.  No more stomach pains and my rash is completely go ne.  I still have gas and my stomach seems to rumble an awful lot.  I saw the GI doctor and he wants to do an endoscopy and colonoscopy to be sure i don't have something else in addition to Celiac.  Do you think t his is overkill?  At the time of my appointment, I was still having oily stools but they seem to be getting better now.  Also, he said oily stool is the pancreas and not Celiac.   ???  He didn't do any labs to test my nutritional status, and said that Celiac patients usually look thinner than I do (I'm 5'7" and 100lbs). I'm really getting sick of doctors.  I might just skip the endoscopy and colonoscopy.  I'm having issues with my insurance anyway.  I've been gluten free for 6 weeks.  The endoscopy won't be accurate at this point anyway and I'm not going back on gluten.  What do you think?

[cyclinglady]

So glad to hear you are feeling better!

I think your GI doctor might not be very celiac-savvy.  Celiacs can definitely be overweight.  Just a body’s response in trying obtain nutrients, I guess.  Not everyone looks malnourished.  I was just normal.  In fact, I had just ran in 1/2 marathon and was doing century bike rides when I was diagnosed despite being anemic!  

He is right, oily stools can be due to pancreatic insufficiency, which is common among celiacs and usually heals on the gluten-free diet.  Some members supplement with digestive enzymes for a while.  You can do a forum search about this topic.  

Celiac disease is systemic!  It can affect many different areas of the body.  Elevated liver tests are also common.  So are gallbladder issues, along with things like migraines, neuropathies, bone issues, joint problems, etc.  

Often we do have concurrent issues, but healing takes so long (bet your GI has never had to master the gluten-free diet). So, you just might need more time to heal. Six weeks is nothing in terms of healing.    Most here take a year to heal.    But only you can decide since you have all the facts.  

Edited September 5, 2019 by cyclinglady

[Mikeymike93]

On 8/16/2019 at 8:04 PM, 42yroldceliac said:

I was just recently diagnosed with Celiac Disease at the age of 42 after years of stomach pain and other various symptoms.  I encouraged my mom to get tested after my diagnosis and she also tested positive for Celiac.  Pretty crazy! I have now been on a strict gluten free diet for 3 weeks, but can’t say that I feel any better.  The only change I’ve noticed is a rash that I’ve had on my hand for years has improved (but has not gone away), and I seem to have less acne than before.  How long did it take for you to notice an improvement with your GI symptoms?

I was diagnosed 4months ago. My symptoms were mostly digestive based. It took about 3months before i noticed my digestive system improving. Even then, it's a slow improvement, but at least noticeable. I am hoping I see noticeable improvement every 3 months. My doctor said there is no timeline as everybody is different but 3-12months depending on how damaged your system is was what I was told. 

[42yroldceliac]

I just wanted to give another update in case anyone is interested.  I had my endoscopy and colonoscopy 2 days ago and even after 2 whole months of no gluten in my diet he was able to visually observe the damage from Celiac Disease (scalloped folds and blunted villi).  I have to wait a week or two for the actual biopsy.  He also found a nodule in my stomach and suspected microscopic colitis in my colon. We’ll see what the biopsies come back with.  I know that microscopic colitis is sometimes associated with Celiac Disease, but I had never heard of issues within the stomach.  Maybe that is just totally separate and coincidental.  Thank you all for your continued support.  I am looking forward to getting the biopsy results and hopefully just moving on with my life.

[cyclinglady]

I am interested!  

My last endoscopy revealed healthy villi, which meant that I was doing a good job of being gluten free.  However, I had  a nodule in my stomach (did not have one six years ago)   Gastric biopsies ruled out H. Plylori (as did my first gastric biopsies some five years ago), the pathologist identified autoimmune gastritis commonly linked to Hashimoto’s and celiac disease.  

 

 

[42yroldceliac]

9 hours ago, cyclinglady said:

I am interested!  

  However, I had  a nodule in my stomach (did not have one six years ago)   Gastric biopsies ruled out H. Plylori (as did my first gastric biopsies some five years ago), the pathologist identified autoimmune gastritis commonly linked to Hashimoto’s and celiac disease.  

 

 

That is interesting!   I will let you know when my biopsies come back.