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1 week gluten-free and I'm frustrated

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I had my endoscopy last Monday and I'm waiting on my results, but my GI told me that I can start a gluten-free diet now. I've been gluten-free for a week and I'm still dealing with loose stools in the morning. I am almost positive that I'm not accidentally eating gluten. I'm not eating dairy because I thought maybe that was it. And now I'm frustrated.

does it take a while for your intestines to settle down after going gluten-free? I also have anxiety and because of this my anxiety is worse. Maybe it's IBS too? Can a person have both?

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A person can have both IBS and Celiac, but a bit of a note, some people have continued issues for weeks with a gluten poisoning before their system returns to a more normal state. It might also be a source of cross contamination in your cooking area. Use all NEW cook ware, gloves, only whole foods and certified ingredients and spices, along with perhaps using freezer paper on your prep surfaces for a clean work area.  Give it a bit more time, you might also try a food elimination diet after another week or two. You could have developed a intolerance to some other foods. I have a few trigger foods that will trigger me with loose stools regardless of gluten. It is a bit of trial and error and everyone is different, keep talking with your doctor, and perhaps a dietician about building a diet that is comfortable for you and meets all your needs. After you figure a bit more out tell us a bit about your diet and we can help you perhaps nail the the culprit from the common ones among us. Good luck and hang in there.

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Give it time one week is no where near enough time to see huge improvements.  I really started to notice things at about one month.  Just focus on doing gluten-free and if it's a shared household (gluten eaters and gluten-free eater) then.work on cross contamination precautions.    And RELAX :) if at 6 months you still have bad diarrhea and a repeat blood TTg Iga comes back looking fine then you and your MD can look into other things that could cause continued issues like IBS or small intestine bacteria overgrowth.  If you TTg blood work comes back high still then you know you are missing something somewhere.  You won't be perfect at this right now or probably in a year...just do the best you can do and don't drive yourself crazy over it.  If you are a super anxious person that alone can give you diarrhea.

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I am a super anxious person. I've got some things going on in my personal life and the celiac diagnosis coupled with those things has made me very anxious. Then I start to panic when my bowels aren't right because I expect them to be better and I worry that something else is going on. How frustrating. 

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3 hours ago, PinkyGurl said:

Give it time one week is no where near enough time to see huge improvements.  I really started to notice things at about one month.  Just focus on doing gluten-free and if it's a shared household (gluten eaters and gluten-free eater) then.work on cross contamination precautions.    And RELAX :) if at 6 months you still have bad diarrhea and a repeat blood TTg Iga comes back looking fine then you and your MD can look into other things that could cause continued issues like IBS or small intestine bacteria overgrowth.  If you TTg blood work comes back high still then you know you are missing something somewhere.  You won't be perfect at this right now or probably in a year...just do the best you can do and don't drive yourself crazy over it.  If you are a super anxious person that alone can give you diarrhea.

tTg is not used for dietary compliance.  The DGP is the correct test for that.  It can take a year or slightly longer for tTg levels to normalize once the gluten-free diet is started so having an elevated number 6 months into the diet is not cause for concern.........unless the number hasn't gone down at all or the DGP is still elevated.

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Your anxiety should ease once you start to heal.  Unfortunately, it takes time to heal, a lot of time.  So just be patient, try to reduce your workload, let things slide around the house, and try to rest.  Focus your energy on learning about your new diet.  

 

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Take all of the above advice, new utensils and learning what you need to change and how.  My first month of just figuring out what the he'll I could eat and not eat was stressful let alone everything else.  After a month your body should start to feel better, stools better, and your mind less stressed because you will then know much more than you do currently having done all your research.  You will adjust, you will get better, and you will find a new normal. I'm over a year post diagnosis and while it's still a pain in the arse my health is good and I'm recovered so that's most important. Hang in there you aren't alone...

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On 11/15/2016 at 11:19 AM, Gemini said:

tTg is not used for dietary compliance.  The DGP is the correct test for that.  It can take a year or slightly longer for tTg levels to normalize once the gluten-free diet is started so having an elevated number 6 months into the diet is not cause for concern.........unless the number hasn't gone down at all or the DGP is still elevated.

TTg Iga is used for compliance 10 months into gluten-free mine went down to 4.  When I was first diagnosed I went gluten free for about 2 weeks and then requested a repeat testing ( I wasn't in denial) and my number dropped 10 pots juat form 2 weeks gluten-free.  So yes this can a d is used as a indicator of compliance.

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37 minutes ago, PinkyGurl said:

TTg Iga is used for compliance 10 months into gluten-free mine went down to 4.  When I was first diagnosed I went gluten free for about 2 weeks and then requested a repeat testing ( I wasn't in denial) and my number dropped 10 pots juat form 2 weeks gluten-free.  So yes this can a d is used as a indicator of compliance.

So what number did it start with initially for your ttg iga.  Mine is 42 to start with, went down to 20 in a month then not sure up to 36, then 20, and after 4 months a 17, which is negative according to me lab (20 above is positive)

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12 hours ago, jerrycho said:

So what number did it start with initially for your ttg iga.  Mine is 42 to start with, went down to 20 in a month then not sure up to 36, then 20, and after 4 months a 17, which is negative according to me lab (20 above is positive)

It's been 2 weeks now and my belly still isn't right. Each morning when I get up and go to the bathroom it isn't normal. Half is normal, half isn't. I had quinoa, chicken, and broccoli for dinner. Maybe that was too much fiber? I just expected the GI issues to resolve immediately and it's not happening that way. You all don't think I should be concerned about that?

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I took 2 months for my gastro conditions to go normal. i used to have loose stools 4 days out of 7 in a week.

 

After gluten-free, the frequency decreases. Now my stools look normal and seldom I have diarrhea. That is 2 months on.

 

I think it takes time. work with your doctor. long time celiac might have things like sibo and candida. Sometimes you might need to clear these issues also and they take time.

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14 minutes ago, jerrycho said:

I took 2 months for my gastro conditions to go normal. i used to have loose stools 4 days out of 7 in a week.

 

After gluten-free, the frequency decreases. Now my stools look normal and seldom I have diarrhea. That is 2 months on.

 

I think it takes time. work with your doctor. long time celiac might have things like sibo and candida. Sometimes you might need to clear these issues also and they take time.

Should I be concerned about SIBO at this point, or should I just be patient and give myself a couple months? My stools are half ok, half not, all in the same bm. At first it's fine, then they're loose. I asked my GI about it and he said it's not cause for concern -- but it certainly doesn't seem "normal". Aside from that I feel ok. I notice my belly is less bloated now that I haven't eaten gluten for 2 weeks. Fatigue hasn't changed much, but I have an infant and a toddler, so I assume that's why I'm sleepy. It's just my stools that aren't normal. I don't want to call my GI and talk about SIBO with him if I just need to be patient. He said I need to be more patient. He said it will take weeks to heal. 

 

Now I'm all freaked out about SIBO..... ?

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do u have stomachache? do u get the runs?

Mine is also half half sometimes still. Other than that, no other symptoms for gastro.

 

chronic fatigue cleared in one month. though i still struggle w muscle aches.

 

in any case, sibo will improve along w the gluten-free diet.

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9 minutes ago, jerrycho said:

do u have stomachache? do u get the runs?

Mine is also half half sometimes still. Other than that, no other symptoms for gastro.

 

chronic fatigue cleared in one month. though i still struggle w muscle aches.

 

in any case, sibo will improve along w the gluten-free diet.

No and no. Sometimes early in the morning I'm gassier than usual. But I haven't had full blown diarrhea in a while. It's just half and half. My stomach luckily doesn't hurt. I just seem to be sensitive to lots of fiber, spicy food, etc. 

it sounds like the testing for SIBO is pretty time consuming so I wasn't sure if I should ask my GI about it before my follow-up in January. Would I need to be experiencing more than I am to warrant concern about SIBO?

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Hi Fbmb,

It may be awhile before you get to normal bowel movements.  It could be months or it could take weeks.  The immune system hasn't gone away.  It is still actively attacking your gut after just a week.  SIBO shouldn't be  a big problem if you avoid sugars and carbs.  Those bacteria have to live on some kind of food, and its the sugars and carbs they thrive on.  Also dairy sugar which we often can't digest at first.

Cut out the source of food for those nasty critters and they die off.

 

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Okay sweetie, here we go again. Don't go off into scenario world. Just stop. Do not worry about anything but celiac right now. Forget SIBO or anything else. You're only TWO WEEKS into the diet!!!!!!!!!!!!!!!!!!!!! TWO WEEKS!!!! The damage wasn't caused in 2 weeks & you won't heal in 2 weeks. It might be a whole year before you have consistently normal bowel movements all the time. Just RELAX. CHILL. SETTLE DOWN. Sheesh, the sheer stress you put on yourself could cause your bowels to be in an uproar! It's going to take time, it's going to take time, it's going to take time. There will be ups & downs like a roller coaster ride. This is NORMAL for celiacs who are newly diagnosed.

 

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On 11/23/2016 at 8:06 AM, squirmingitch said:

Okay sweetie, here we go again. Don't go off into scenario world. Just stop. Do not worry about anything but celiac right now. Forget SIBO or anything else. You're only TWO WEEKS into the diet!!!!!!!!!!!!!!!!!!!!! TWO WEEKS!!!! The damage wasn't caused in 2 weeks & you won't heal in 2 weeks. It might be a whole year before you have consistently normal bowel movements all the time. Just RELAX. CHILL. SETTLE DOWN. Sheesh, the sheer stress you put on yourself could cause your bowels to be in an uproar! It's going to take time, it's going to take time, it's going to take time. There will be ups & downs like a roller coaster ride. This is NORMAL for celiacs who are newly diagnosed.

 

 

On 11/23/2016 at 8:06 AM, squirmingitch said:

Okay sweetie, here we go again. Don't go off into scenario world. Just stop. Do not worry about anything but celiac right now. Forget SIBO or anything else. You're only TWO WEEKS into the diet!!!!!!!!!!!!!!!!!!!!! TWO WEEKS!!!! The damage wasn't caused in 2 weeks & you won't heal in 2 weeks. It might be a whole year before you have consistently normal bowel movements all the time. Just RELAX. CHILL. SETTLE DOWN. Sheesh, the sheer stress you put on yourself could cause your bowels to be in an uproar! It's going to take time, it's going to take time, it's going to take time. There will be ups & downs like a roller coaster ride. This is NORMAL for celiacs who are newly diagnosed.

 

Thanks :) I had an ok week, but yesterday and this morning my stomach was a little off again. I guess like you said, roller coaster ride. I was really excited that things seemed to be getting back to normal. I'm sure I'm not getting CC'd, because I'm so careful and neurotic. Maybe I'm just sensitive. And like you said, my stress level doesn't help anything. 

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1 hour ago, Fbmb said:

 

Thanks :) I had an ok week, but yesterday and this morning my stomach was a little off again. I guess like you said, roller coaster ride. I was really excited that things seemed to be getting back to normal. I'm sure I'm not getting CC'd, because I'm so careful and neurotic. Maybe I'm just sensitive. And like you said, my stress level doesn't help anything. 

You're welcome.

Yep, just get used to expecting this to be wonky for a while. It's too early to say how sensitive you are just yet. However, be kind to your poor old gut & stay on the bland side of foods rather than going for things like tomato sauce & hot peppers & such as that. Corn is tough to digest too so you might want to steer clear of that for a while. 

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13 hours ago, squirmingitch said:

You're welcome.

Yep, just get used to expecting this to be wonky for a while. It's too early to say how sensitive you are just yet. However, be kind to your poor old gut & stay on the bland side of foods rather than going for things like tomato sauce & hot peppers & such as that. Corn is tough to digest too so you might want to steer clear of that for a while. 

So it's typical after 3 weeks to have normal bowels for several days and then revert back a bit? I don't want to bug my GI if this is just what's to be expected. 

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1 hour ago, Fbmb said:

So it's typical after 3 weeks to have normal bowels for several days and then revert back a bit? I don't want to bug my GI if this is just what's to be expected. 

Yep. Even longer than 3 weeks.

Also, there are 2 sites I think you will find quite helpful. Both are by the same person, Tricia Thompson MS, RD. She's brilliant and has celiac herself. The first, The Gluten Free Dietician, is free and the second, The Gluten Free Watchdog, is $5 a month. Well worth it in my opinion.

http://www.glutenfreedietitian.com

https://www.glutenfreewatchdog.org

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For me, it was more neurological symptoms, but yes you will revert back and forth for a while before things start to feel "normal" again.  Your body will be more sensitive during this time of healing because it's recognizing the gluten for what it is, poison.  I want to encourage to take the advice from the previous posts into consideration.  Let some things around the house go, and take the rest your body needs to heal.  Drink plenty of WATER (not coffee, juice, or soda).  I include juice in the "no" list because it can be loaded with a lot of sugar which may make it difficult for your body to continue to heal as it should.  Tea is okay, but try to be careful how sugar is put in the tea.  For a sweetener, honey is a good alternative to table sugar as it's not as processed.  Drinking water will help flush out the poison your body is detoxing from your body.

For a diet, try to stay away from processed foods as much as possible.  Your body is healing from the damage done over the years of ingesting.  Because of this, it needs the nutrients vegetables and meat can provide.  If you are vegan/vegetarian, there are alternatives out there for the protein gained from meat.  The protein content is an important component as it is a building block for our body. 

You will have good and bad days, but as time goes on you should start to have more good than bad.  As one post stated, it can be roller coaster emotionally, spiritually, psychologically, and emotionally.  Don't give up thought, because your body is needing you stay in the game.  If you accidentally get glutened, don't panic or get discouraged.  Deal with the aftermath and go on.  Life hands all of us curve balls, but it is how we respond to those curve balls that make the difference positively or negatively.

Hang in there. Welcome to the forum! :) 

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Hi fbmb,

 

When I first started the gluten-free diet in July, I was about three weeks in when my bowels stopped completely and I thought I was going to die!!!!!

 

I went to my gp and he said that with any diet change, especially one this severe, the body will take time to figure out what a "NEW NORMAL" is going to be. He said to give it a few days and see what happens.  It eventually sorted itself out, thanks to Restorelax and prune juice (not together) lol.

 

As others have said, "Be patient"  It is a huge learning curve but one that will ultimately make you feel better.

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This is why we say to stick with whole foods too. If you stick with whole foods, you don't have to worry about if you got glutened or not. Maybe even go so far as the Fasano Gluten Contamination Elimination Diet. If you follow that, there is no way you have to worry about the slightest chance of gluten cross contamination. I only recommend this to you in particular b/c I am aware of your anxiety and know how much it will plague you wondering if you got into something you shouldn't have. You can even make your own mayo -- it's just egg, oil & lemon juice - lasts a week. See, there are ways to have things so you don't feel deprived. Here's the diet:

Table 1

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

  Allowed Not allowed
Grains
Plain, unflavored, brown and white rice
Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours
Fruits/Vegetables
All fresh fruits/vegetables
Frozen, canned or dried
Proteins
Fresh meats
Lunch meats
Fresh fish
Ham, bacon
Eggs
Other processed, self-basted or cured meat products
Dried beans
 
Unseasoned nuts in the shell
 
Dairy
Butter, yogurt (unflavored), milk (unflavored), aged cheeses
Seasoned or flavored dairy products
Processed cheeses
Condiments
Oils, vinegar, honey, salt
Flavored and malt vinegars
Beverages
100% fruit/vegetable
 
Gluten-free supplemental formulas
  Gatorade, milk, water

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17 hours ago, squirmingitch said:

You're welcome.

Yep, just get used to expecting this to be wonky for a while. It's too early to say how sensitive you are just yet. However, be kind to your poor old gut & stay on the bland side of foods rather than going for things like tomato sauce & hot peppers & such as that. Corn is tough to digest too so you might want to steer clear of that for a while. 

So it's typical after 3 weeks to have normal bowels for several days and then revert back a bit? I don't want to bug my GI if this is just what's to be expected. 

 

12 minutes ago, squirmingitch said:

This is why we say to stick with whole foods too. If you stick with whole foods, you don't have to worry about if you got glutened or not. Maybe even go so far as the Fasano Gluten Contamination Elimination Diet. If you follow that, there is no way you have to worry about the slightest chance of gluten cross contamination. I only recommend this to you in particular b/c I am aware of your anxiety and know how much it will plague you wondering if you got into something you shouldn't have. You can even make your own mayo -- it's just egg, oil & lemon juice - lasts a week. See, there are ways to have things so you don't feel deprived. Here's the diet:

Table 1

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

  Allowed Not allowed
Grains
Plain, unflavored, brown and white rice
Millet, sorghum, buckwheat or other inherently gluten-free grains, seeds, or flours
Fruits/Vegetables
All fresh fruits/vegetables
Frozen, canned or dried
Proteins
Fresh meats
Lunch meats
Fresh fish
Ham, bacon
Eggs
Other processed, self-basted or cured meat products
Dried beans
 
Unseasoned nuts in the shell
 
Dairy
Butter, yogurt (unflavored), milk (unflavored), aged cheeses
Seasoned or flavored dairy products
Processed cheeses
Condiments
Oils, vinegar, honey, salt
Flavored and malt vinegars
Beverages
100% fruit/vegetable
 
Gluten-free supplemental formulas
  Gatorade, milk, water

Thanks for this! I've been doing pretty well eating mostly unprocessed foods. Last night I had a baked potato with butter on it. I also put sour cream on it. I think I did ok with that. I found some Kashi gluten-free waffles and I had a couple of those for breakfast with some natural peanut butter and some raspberry preserves (organic, gluten-free). For lunch I'll have another potato (leftovers). I have been taking a gluten-free probiotic and I like it. I'm doing my very best. I miss milk and dairy, and would like to add those. I've never been lactose intolerant. If you have a reaction to dairy is it usually pretty immediate? For me, and sorry for the TMI, but I only go #2 once a day and it's then that I'll notice anything abnormal. I don't usually have reactions after eating dairy. It's the next morning that I'll notice looser stools. So it's hard for me to know if it's dairy or not. My friend is lactose intolerant and she said if she eats dairy she is sick within 2 hours. My GI didn't want me to cut anything out, aside from gluten because he doesn't want me to restrict my diet too much. But I've laid off dairy a lot and I don't know if it's necessary. 

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How long have you not been eating dairy products?  After a about month or so going without, start to slowly add it back into your diet.  I had cut out all dairy when I went gluten free last year.  When I started to add it back in, I found I could handle a small amount of any dairy.  Felt like a lead ball in the middle of my stomach after eating too much dairy. 

You will start to know what your body is liking or not liking throughout this whole gluten detox process.  It's important to know what your body is telling you right now, and like anything right now it is a learning process.

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