Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

On gluten-free Diet But No Improvement

Guest dfs

By Guest dfs
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest dfs
Guest dfs
Posted

Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)

plantime Contributor
plantime
Posted

Since it has only been 2 weeks, he could be detoxing. This means that his body is still eliminating gluten from his system. Give it three months for real improvement. He has had this, unknown and untreated, for 30 years. That makes for a lot of damage, which needs a lot of time to heal.

Corkdarrr Enthusiast
Corkdarrr
Posted

My doctor always tells me that it's okay for things to get worse before they get better. Once you've finally allowed for the body to heal, it begins the process of flushing all the ickies out

Guest nini
Guest nini
Posted

it took me a minimum of 6 months to start feeling better, and almost 2 years before I felt really truly human. I was dx'ed at 34... it takes time to detox and get all the hidden glutens out of your life, and sometimes other intolerances such as dairy and soy rear their ugly heads after eliminating gluten from your diet.

rinne Apprentice
rinne
Posted

I am wondering what your son's symptoms are and if any in particular are getting worse. Two weeks is a pretty short time but the gluten intolerance could be a secondary problem not the primary.

Guest dfs
Guest dfs
Posted
From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)

From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)

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

Celiac.com Sponsor (A8-M):


Guest dfs
Guest dfs
Posted

AndreaB - (Being new here, I'm probably botching up obvious way to reply....apologies). Thank you for response. Will look into personal care products. Re other "allergies," I have another newbie question. We learned about son's intolerances through the Enterlab stool test. Previously, oft-repeated allergy blood tests came back negative (i.e., for gluten, lactose, etc.). So, the question is: Is there a way to learn of an insensitivity/intolerance other than elimination diet? And yes, forum folks are wonderfully human, supportive...and EXPERT in all aspects of this condition. - dfs

Since it has only been 2 weeks, he could be detoxing. This means that his body is still eliminating gluten from his system. Give it three months for real improvement. He has had this, unknown and untreated, for 30 years. That makes for a lot of damage, which needs a lot of time to heal.

Thank you for response. We're starting to learn about "detoxing."

Guest dfs
Guest dfs
Posted
it took me a minimum of 6 months to start feeling better, and almost 2 years before I felt really truly human. I was dx'ed at 34... it takes time to detox and get all the hidden glutens out of your life, and sometimes other intolerances such as dairy and soy rear their ugly heads after eliminating gluten from your diet.

Hearing how long recovery can take, does help ease the anxiety about WHAT'S WRONG. We know we need to be constantly vigilant, and are so glad this forum exists.

Guest dfs
Guest dfs
Posted
I am wondering what your son's symptoms are and if any in particular are getting worse. Two weeks is a pretty short time but the gluten intolerance could be a secondary problem not the primary.

Thank you for response. Symptoms are: exhaustion, severe pain in entire abdominal area, bowel movements ranging from occasional blood in stool to severe BM urgency but little or no result. The nightime drill is to start tossing/fidgeting around 1am (turned in at 10), and then serious pain beginning around 4:00. These have all worsened since new diet start-up, tho' hunger level has increased. Prior medical exploratories were: multiple colonoscopies (all fine) and camera in small intestine (also fine). Diet was never addressed, as repeated bloodwork showed no allergies. (We learned about multiple intolerances through Enterolab stool test). We will stay on the diet, but welcome any chance to learn more about how to feel better and know what's going on.

elisabet Contributor
elisabet
Posted

Hello and welcome,I am a mom of a13 years old son,It will take about 3 months to see any positive changes,but it will come.Does he drink enough water?drinking at least 2 liter of water a day,helps a lot.

My son is a different person now.

elisabet

LKelly8 Rookie
LKelly8
Posted
. . . Symptoms are: exhaustion, severe pain in entire abdominal area, bowel movements ranging from occasional blood in stool to severe BM urgency but little or no result. . .

Sounds like constipation. Does the gluten-soy-casein-corn restricted diet allow for enough fiber? Water?

Glad to hear his appetite has improved, at least his body seems to like this new intolerance-free food - even if he can't quite digest it yet.

RiceGuy Collaborator
RiceGuy
Posted

It took six months before I noticed any changes at all. It's been almost two years gluten-free now, and still I'm struggling with various problems. New sensitivities have been cropping up, but until I figured them out I'd be doing worse.

This board and its members can be most helpful. I hope you obtain the answers you need.

AndreaB Contributor
AndreaB
Posted
So, the question is: Is there a way to learn of an insensitivity/intolerance other than elimination diet? And yes, forum folks are wonderfully human, supportive...and EXPERT in all aspects of this condition. - dfs

No other way to look for allergies that I know of.

A website you might want to look at is by someone who does not eat gluten/dairy/soy or corn. It is Open Original Shared Link. Look for an article by the name of Answer. I copied the article from his old website.....the new one has a revised copy I believe....just less wordiness. I haven't read the whole article yet but have been amazed by what I have read. He also lists things to eat to really benefit in healing if there are any other autoimmune responses aside from celiac. He does go through food ideas for a typical day I think.

Mere Newbie
Mere
Posted

Hi everyone,

I was recently diagnosed with Celiac disease. I have been on a gluten free diet for two weeks now. It is hard, but I am getting use to it. Every now and then I have bathroom problems and I know it is just because I am still healing. I am eating everythign gluten free and making sure medication is also. I am on the run everyday of the week from 8 am till 9 at night as I am in school trying to get my Masters degree. It is very difficult when I get sick at school, work, or even when I am seeing clients. I know where every bathroom is everywhere I go, and it takes me about an hour or two to get ready just because I spend most of that time in the bathroom. I am embarresed to be around my friends as I might get sick and everytime I go somewhere (especially in the mornings) I usually have to stop about twice to use the restroom on the way to my destination. I was just wondering how everyone else deals with this? I am almost at the point where I just don't want food! I have taken imodium before but I hate the way it makes me feel. Does anyone have any suggestions for me? I know it will just take time, but it needs to hurry up and get better as it is running my life!

THanks, Mere

par18 Apprentice
par18
Posted
Hi everyone,

I was recently diagnosed with Celiac disease. I have been on a gluten free diet for two weeks now. It is hard, but I am getting use to it. Every now and then I have bathroom problems and I know it is just because I am still healing. I am eating everythign gluten free and making sure medication is also. I am on the run everyday of the week from 8 am till 9 at night as I am in school trying to get my Masters degree. It is very difficult when I get sick at school, work, or even when I am seeing clients. I know where every bathroom is everywhere I go, and it takes me about an hour or two to get ready just because I spend most of that time in the bathroom. I am embarresed to be around my friends as I might get sick and everytime I go somewhere (especially in the mornings) I usually have to stop about twice to use the restroom on the way to my destination. I was just wondering how everyone else deals with this? I am almost at the point where I just don't want food! I have taken imodium before but I hate the way it makes me feel. Does anyone have any suggestions for me? I know it will just take time, but it needs to hurry up and get better as it is running my life!

THanks, Mere

Is taking a medical leave of absence an option? Staying so busy has to have some effect on your recovery. A couple of weeks or a month off might make all the difference.

Tom

gfp Enthusiast
gfp
Posted

Starting gluten-free is always hard.....

some really lucky people get positive effects really quickly, others take longer.

Sometimes those who react well immediately then go through a phase of reacting badly...before they feel better again.

Nearly everyone who starts a gluten-free diet looks back in 6 months and see's they were not really gluten-free and see's where they got caught out. Hidden gluten and cross contamination are the main culprits not bread or pasta.

Withdrawal is also a common factor... and can make the intial recovery a bit rocky...

Another common thing is we often start eating more of other allergens like soy and dairy.

You just have to TRUST US when we say keep at it... check and recheck everything.. don't take risks and nearly everyone does get much better. I wish i had a magic wand and could transfer all out knowledge...

Search this forum for cross contamination (CC) ....

What seems to happen is when we are newly diagnosed we are most vulnerable., many find out that they react to soy and milk but this seems to subside in many after the gut heals.

Also as you get better the healing overtakes the damage from gluten you get more value in terms of nutrients from food and your body self-heals better.

When you start out a single incident like eating at a resto can knock you back weeks... after a few months it knocks you back but your body is ion a better position to heal, adsorb nutrients etc. etc.

The best advice is start out paranoid... don't have any gluten in your kitchen and don't use the same utensils ... spouses, kids etc. need to get on board... (this is usually temporary but its most important in the beginning)

This all sounds drastic and it is.... but its the fastest way I believe to get through the hardest part and put it behind you.

Again.. check CC..... and hidden gluten....

avoid extra additions like soy and increased dairy and think of cutting them out altogether or at least spend a week without and see.

check CC again!

the best thing you can eat is fresh fruit, vegetables, fish and meats all prepared from scratch... if you can't do this then the closer the better!

BE PARANOID.... its only temporary but see gluten as the enemy, its wily as a coyotte and its out to get ya.

and did I mention ... check CC!

marciab Enthusiast
marciab
Posted

I made several mistakes :lol: in the beginning ... OK, I still do ... :)

The worst thing I did was to immediately start eating gluten free processed grains like they were going out of style ... Empty calories. And I am hypoglycemic. :blink:

The other huge mistake was to start drinking meal replacements. Most meal replacements have something, even in the minute form, that I am sensitive to. Check them all thorougly. :ph34r:

Other than that I would look at all the new foods that you have just introduced.

Hope this helps. Marcia

jerseyangel Proficient
jerseyangel
Posted

In addition to all of the good advice above, I found that cutting out all processed foods and even the gluten-free grains made a huge difference.

Maybe go to a diet of whole, natural foods (meats, fish, eggs, veggies, fruits) until you're feeling better. Then, try adding foods back in, one at a time.

Mere Newbie
Mere
Posted
In addition to all of the good advice above, I found that cutting out all processed foods and even the gluten-free grains made a huge difference.

Maybe go to a diet of whole, natural foods (meats, fish, eggs, veggies, fruits) until you're feeling better. Then, try adding foods back in, one at a time.

THANK you everybody for all of your great advice! :) I am going to try it all! :)

jaten Enthusiast
jaten
Posted

The damage doesn't heal overnight just like it doesn't happen overnight. I am 9 mos gluten-free, and am just now tolerating even most gluten-free foods. He should stick with fresh, "whole" foods rather than processed foods. Baked chicken, rice, kale, bananas (and, oddly, apples) were about the only foods that I could tolerate for a long time, until real healing began to take place.

I, too, ached and felt like a train wreck for quite a while after going gluten-free. Hang in there. gluten-free is the way to go, and it does get easier and he WILL feel better one day in the not-too-distant future.

Mere Newbie
Mere
Posted
The damage doesn't heal overnight just like it doesn't happen overnight. I am 9 mos gluten-free, and am just now tolerating even most gluten-free foods. He should stick with fresh, "whole" foods rather than processed foods. Baked chicken, rice, kale, bananas (and, oddly, apples) were about the only foods that I could tolerate for a long time, until real healing began to take place.

I, too, ached and felt like a train wreck for quite a while after going gluten-free. Hang in there. gluten-free is the way to go, and it does get easier and he WILL feel better one day in the not-too-distant future.

I have another question to ask everyone. For some reason, When I wake up, I get sick and then after about an hour I am fine for the rst of the day. Is this normal? Do most of you get sick in the morning before you have even eatin any food at all!?

jesscarmel Enthusiast
jesscarmel
Posted
I have another question to ask everyone. For some reason, When I wake up, I get sick and then after about an hour I am fine for the rst of the day. Is this normal? Do most of you get sick in the morning before you have even eatin any food at all!?

i totally got worse before i got better and i was pissed because everything i had heard and read (before i found this site) was that you get better within two weeks. so not true. it took me about 3 months to feel normal. and i was defintley more sick in the morning and still am sometimes. exact same thing with me an hour after im sick i feel normal for the rest of the day!!! so weird that someone else has the same thing!

Jess

Shalia Apprentice
Shalia
Posted
Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs

If it's only been two weeks, he could still be going through some nasty withdrawls, too, especially coming off ALL those foods. Both gluten and casein can act as opiates on the brain and cause nasty withdrawl symptoms.

Good luck to you and your son!

Shalia

Archived

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

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


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...