It Was Supposed To Be Over At Gluten Free! Help :(

[AnnaChristine18]

This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand.

 

My symptoms started December 7th 2013.

They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help.

December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure."

I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life...

I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! Summer is coming up but it won't be any summer for me.

I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure.

I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change.

Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I now have an extremely healthy diet and haven't even sipped a glass of wine in 4 months. But I feel and look horrible.

It was supposed to be over at Gluten free. I feel WORSE than I did before.

I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal.

What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live. Is it ibs? Refractory Celiac? It doesn't make any sense!!!

[mamaw]

Consider yourself  in terms  of an infant  at  the present time because  being  new to gluten-free  your  are in the infancy  phase...There  is no cure  for  celiac  just   control .....100% gluten-free  24/7  365  days  a  year for life  yes  I  said  for LIFE>>>>>>

It is  a  hard  thought  to swallow but  we  have to be honest.......

Now  you are 17  have  done  a lot  of  abusing  your body  already, drugs,  booze,  junk  food.....if   you  were  putting  in  nothing healthy   into  your  car's  gas  tank  or  maybe  no  oil  or the  wrong  gas  what  so you think  will happen? You  have  doen the  same  thing to your body&  overtime  this  is  what  you have at present  a  broken  done  immune   system....

Now  the good  news  is  you  can make  changes  & repair  the  damage  but  it  doesn't  happen over  night , yes, some  see instant  relief  others  it  can  take  a  year or  two  to  even  begin to see  change  but  for  most  it does  come.... Stay focused     &  it  will happen...  you make it happen....

It is  normal  to  feel  anger,  sadness,   hopelessness , denial  & so on  so  don't  think you are  crazy  , your  are  not....all part  of the  healing  process....  We  need  healing  in body, mind  & spirit ......

Our  kids  are  both in high  school 16  &   13  they  survive  quite  well as teenagers  being  gluten-free.. I  can  say  though  they never  used  drugs  for pleasure or  otherwise,  do not  drink  or  live  in the  fast  world... They both  are  honor  students  &  are  football players,  Wrestlers  &  track  stars  at their  school.. They  both  are  hunks & very popular....... so you to  can  do this....many young adults  are  surviving  being  gluten-free....

I would suggest  blood work to see  if  you need Vit D B-12  & so on....

  You said  no summer for  me!  Why not?  friends  should like  you for the person  you are not  how   you look  ..... this  is a hard lesson to learn for a young  person....people  who  you think  are  friends  may  not  be true friends....true  friends  don't  judge.... they carry you through the hard times....

And  when  you are  actually old  enough  to  consume  alcohol    there  are  plenty of  gluten-free  choices.....

It    happens  that  some  can  have more than one thing  wrong with them  so  yes, you can have IBS, Celiac  & so on.. All  very  closely  similar.....

There  can be  a  chance  that after  your  body heals  a bit  you can try to add  dairy back  in.....

Your  food  maybe gluten-free  but  what  about  CC  from  cooking utensils, pots & pans.....toothpaste...  Are  you  still eating  a lot of processed  food  even if it is gluten-free  that can cause  problems... while you are  healing....

Life  is  short handle  with  care....you have only one  shot to get it  right....

blessings

[GFinDC]

Hi AC18,

 

Welcome to the forum!

 

Whoever told you you would be fine quickly by just stopping gluten is all wrong.  Many people have ongoing symptoms for 6 months to 18 months or more after going gluten-free.  It's not an instant fix.  Your body will continue to make immune cells for possibly several months after an exposure to gluten.  So the trouble makers don't give up easily.  Any little bit of gluten in your diet will spin the immune reaction up again.  So watching out for cc (cross-contamination) is important.  Sharing a toaster with regular gluteny bread is a no-no.  Same problem if you share a peanut butter jar with people who are eating regular bread.  These are just some examples, but there are many more possibilities for cc.  Kissing is one cc source some people don't think about at first.

 

It is not real unusual to gain some weight after going gluten-free.  It's normal for your body to absorb more nutrients (which is good) as your gut begins to heal.  It seems Rifixamin is an antibiotic so it could cause GI distress also.  It makes sense for your dr to try it for a little while to see if it helps, but you need to be sure and take probiotics also.  Most likely you just need more time healing and eating a totally clean 100% gluten-free diet.  If someone is baking in  your kitchen using regular gluten flour, the flour dust can be a problem.  The flour can float around and land on surfaces hours later.

 

Refractory celiac is rare and not something to consider at so early a point in your healing process. 

 

Open Original Shared Link

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

[HavaneseMom]

I'm so sorry to hear you are feeling so bad and have such a hard time.

I am still in the healing process too and the very worse time for me was from 3 1/2 - 5 1/2 months after going gluten free. I was very frustrated like you are, and then just before I reached the 6 months mark, I had a breakthrough and started to feel really good.

There is a lot of mis-information out there that people should start to feel good right away after going gluten free, but like others said, it takes 6 months to 18 months for most people.

One thing I did try before I started to feel better was the gluten free low FODMAPS diet. My GI doctor suggested it because I was having painful bloating like you mentioned having. I wasn't super strict about it, but I tried to follow it for a couple of weeks and it seemed to calm my system down quite a bit.

There is a ton of info online about it, but here is a link if you want to ask your GI doctor about it:

Open Original Shared Link

Hope you feel better soon.

[AnnaChristine18]

Thank you so much for this bit of hope. My doctor told me that since I had such minimal damage to my intestines (she said we caught the celiac in it's early stages) that I would get better within about 2 months tops. It's 4 months later and I feel worse even though I'm strictly gluten free, dairy free, and grain free. I've looked into FODMAPS recently, as well as the SCD diet. Do you know anything about SCD? And why is it do you think that you felt the worse between 3 1/2 to 5 1/2 months? Because I think I started feeling even worse after around month 3 of being gluten free. I feel so beyond hopeless.

I'm so sorry to hear you are feeling so bad and have such a hard time.

I am still in the healing process too and the very worse time for me was from 3 1/2 - 5 1/2 months after going gluten free. I was very frustrated like you are, and then just before I reached the 6 months mark, I had a breakthrough and started to feel really good.

There is a lot of mis-information out there that people should start to feel good right away after going gluten free, but like others said, it takes 6 months to 18 months for most people.

One thing I did try before I started to feel better was the gluten free low FODMAPS diet. My GI doctor suggested it because I was having painful bloating like you mentioned having. I wasn't super strict about it, but I tried to follow it for a couple of weeks and it seemed to calm my system down quite a bit.
There is a ton of info online about it, but here is a link if you want to ask your GI doctor about it:
Open Original Shared Link

Hope you feel better soon.

 

I'm so sorry to hear you are feeling so bad and have such a hard time.

I am still in the healing process too and the very worse time for me was from 3 1/2 - 5 1/2 months after going gluten free. I was very frustrated like you are, and then just before I reached the 6 months mark, I had a breakthrough and started to feel really good.

There is a lot of mis-information out there that people should start to feel good right away after going gluten free, but like others said, it takes 6 months to 18 months for most people.

One thing I did try before I started to feel better was the gluten free low FODMAPS diet. My GI doctor suggested it because I was having painful bloating like you mentioned having. I wasn't super strict about it, but I tried to follow it for a couple of weeks and it seemed to calm my system down quite a bit.
There is a ton of info online about it, but here is a link if you want to ask your GI doctor about it:
Open Original Shared Link

Hope you feel better soon.

[Adalaide]

Like someone else mentioned, have you eliminated all sources of CC in your house as suspects? You aren't sharing cutting boards, colanders or wooden spoons with wheat eaters? You use stainless steel pans if you share pans? Lots of it is explains in the newbie thread that was linked, much more than I'll think to mention here. And while we all (every one of us) thought we were totally awesome at this gluten free thing at 3 or 4 months, many of us were just getting past the end of making newb mistakes at that point. Whether it's having picked up the wrong box of Rice Krispies, the wrong soy sauce, buying gluten-free cupcakes in a regular bakery out of the case, not realizing a favorite herbal tea has barley. There are so many little things. I'm not saying it's something to beat yourself up for, don't! I'm saying that it's something to look for and correct if it's an issue so you can feel better. And as pointed out, while some start to feel better fast, some take longer. Life isn't a destination, it's a journey. Have patience and enjoy what you can when you can.

[GFinDC]

Hi AC18,

 

Here's links to the beginners info threads.  Something else people sometimes forget to check is vitamins and medicines they may be taking.  They may have gluten also.  Maybe if you give us a list of things you eat we can help spot problems.  If there are any.

 

Your doctor told you everything looked pretty good right?  Well, that's stretching it a bit.  The endoscope can only see the first 5 feet or so of the small intestine.  There are 20 to 22 feet of gut in the small intestine.  So they can't even see most of it.  Saying the first 5 feet looks fine and assuming that means the rest is fine is a mistake.  There's no way for them to know that without a different test procedure.

 

Being celiac sometimes means we need to learn how to be patient with our bodies.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[dilettantesteph]

It will get better.  A lot of us have faced this.  It can take awhile to learn enough about being gluten free.  It can take awhile to heal.  You could use a doctor who will be more helpful.    Don't lose hope. 

 

As some others mentioned, are you living with your family?  Are they eating gluten?  Could you be getting gluten contamination from them?  That seems the most likely source of problems to me.

[AnnaChristine18]

Like someone else mentioned, have you eliminated all sources of CC in your house as suspects? You aren't sharing cutting boards, colanders or wooden spoons with wheat eaters? You use stainless steel pans if you share pans? Lots of it is explains in the newbie thread that was linked, much more than I'll think to mention here. And while we all (every one of us) thought we were totally awesome at this gluten free thing at 3 or 4 months, many of us were just getting past the end of making newb mistakes at that point. Whether it's having picked up the wrong box of Rice Krispies, the wrong soy sauce, buying gluten-free cupcakes in a regular bakery out of the case, not realizing a favorite herbal tea has barley. There are so many little things. I'm not saying it's something to beat yourself up for, don't! I'm saying that it's something to look for and correct if it's an issue so you can feel better. And as pointed out, while some start to feel better fast, some take longer. Life isn't a destination, it's a journey. Have patience and enjoy what you can when you can.

I have a different toaster, different cutting boards, colanders, everything than my parents. We even have seperate kitchens!! Yes, my house has 2 kitchens. There's no possible way I could be getting cc from the other things you mentioned (gluten free cupcakes etc) because I'm on a Paleo diet. I don't eat even gluten-free grains, OR processed foods at all. My diet strictly consists of meat, fruit, vegetables, and nuts. Believe me I'm not getting cross contaminated. LIke I said, I even had a blood test done a few weeks ago to test if there is still gluten in my system.

[AnnaChristine18]

I'm NOT getting cross contamination. Just because I've only been gluten free for 4 months doesnt mean I don't know what i'm doing. Believe me, I'm extremely cautious (some might say paranoid/OCD...)

I have TWO kitchens in my house. One that's totally gluten free for me and one that my parents use. I don't eat out, I cook my own meals, I have seperate cutting boards,, etc. Even my own kitchen. 

I'm eating a strict paleo diet.

NO processed foods, no grains make it hard to be cross contaminated. My diet consits strictly of meat, fruits, nuts, and vegetables. THat's all. And yes I've checked all my vitamins, supplements, etc. THat's one of the first things I did. I even make my boyfriend eat gluten-free when he's with me otherwise I won't kiss him.
Anyway, my doctor had me take another bloodtest a few weeks ago to test if I'm still getting glutened and it came out fine.

Getting glutened is such a source of anxiety and fear for me. It happened one time when my mom made breakfast instead of me. She made paleo pancakes, using almond flour and had the recipe perfectly but she sprayed the grittle with Pam and that has wheat in it. That was a month ago. But I've felt the exact same way since December.

[AnnaChristine18]

So if I'm not getting cross contaminated, what could be going wrong?
After 4 month I'd think I would feel just a LITTLE better at least.
 

Also does anyone know anything about the SCD diet? I'm thinking about giving it a try

[kareng]

Just want to point out, for those who may not realize it, regular Pam does not contain wheat but the " baking spray" version does, it is for greasing and flouring pans.

When we hear stories like yours, of course the first thing we all suggest is really making sure you are gluten-free. You don't know how many people come back with things like - I eat fast food twice a week or eat non gluten-free oatmeal or......

Anyway.... It's hard to know exactly what might be going on. You may just need more time to heal. Your body is dealing with healing and, it sounds like, a really different way of eating. Maybe you are eating a lot more fiber. A lot less fat. Maybe one or two of the foods you are now eating a lot more of are bothering you.

Maybe keeping a food & symptom journal would be helpful. You might notice that every time you eat X you have lots of gas, for example.

[HavaneseMom]

Thank you so much for this bit of hope. My doctor told me that since I had such minimal damage to my intestines (she said we caught the celiac in it's early stages) that I would get better within about 2 months tops. It's 4 months later and I feel worse even though I'm strictly gluten free, dairy free, and grain free. I've looked into FODMAPS recently, as well as the SCD diet. Do you know anything about SCD? And why is it do you think that you felt the worse between 3 1/2 to 5 1/2 months? Because I think I started feeling even worse after around month 3 of being gluten free. I feel so beyond hopeless.

I'm glad to hear you have a little hope. I think you will feel much better if you keep doing what you are doing and give it a little more time. Your doctor shouldn't have told you that you would feel better in 2 months, because there is no way to predict that, and it set you up for disappointment when it didn't happen. Everyone's body heals and a different rate.

You asked why I thought I had that period of time when I felt worse at 3 1/2 to 5 1/2 months and I have no idea what caused that for sure. I was not eating out and was eating only a select few processed foods and am confident I was eating gluten free, like you are. It was very frustrating, but I think it was just part of the healing process for me.

I have also realized that I was very stressed out and upset about my Celiac diagnosis during this time, and stress goes right to my stomach. I have noticed when I am upset that my stomach symptoms are much worse. I will actually get a burning knot feeling in my upper stomach and my lower belly will bloat up too. I am mentioning this, because it sounds like you are very upset and I wanted to bring up that sometimes being really upset can cause a person stomach trouble too. Do you feel a little better when you are out having fun with friends or your boyfriend? If you feel a little better when you are having a good time and your mind is off of your problems, versus when you are at home and more focused on how bad you feel, that could be a sign that stress bothers your stomach too.

About the SCD diet, I have heard some really good things about the Specific Carb Diet. I think if you search this site you will find some positive post about it. I actually looked in to it too and may try it, or try sticking to the FODMAPs diet more strictly to try to get my bloating under control. I am feeling much better Celiac wise, but am still having bloating issues possibly from other foods or stress.

Good luck!

[dilettantesteph]

I'm sorry for assuming cc.  It is generally the most likely.  We aren't trying to say that you aren't careful.  Some of us have a deficiency in digestive enzymes.  Have a look at this: https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bpancreatic+%2Binsufficiency

That might be it.

[1desperateladysaved]

Greetings,

 

I am on the SCD diet.  It sounds to me your diet is very similar.  I am not sure what you want to know about it.  I have the book Breaking the Vicious Cycle by Elaine Gottschall that described it to me.  One also can go to a website about it.  This lists the allowed foods.www.breakingtheviciouscycle.info

 

Digestive enzymes helped me very much.  Celiac makes your body so it doesn't absorb nutrients well.  You probably are depleted in some and it takes a while to bring the levels up.  I take a multi-vitamin and other supplements my caregivers have recommended for me.  Glutamine is so soothing!

 

My MD thought perhaps I didn't have celiac (after all) when I wasn't better after a few days!.  I had symptoms 30 + years and lots of need to recover.  I believe now I had cross contamination issues after 4 days.  As time went on I discovered many things that helped in my quest to feel better.

 

You have begun a journey.  You don't know everything now that you will know.  Your walk could have twists, bumps and turns.  But if you keep walking in a healthy direction, you will get somewhere.

 

All of the best to you in your healing,

 

Dee

[AnnaChristine18]

Are there specific digestive enzymes you could recomend? I've been taking Papaya enzymes. My nutritionist recomended them to me but they haven't helped at all. Then again, nothing's helped at all. Is there another brand that could possibly work better for me?

[jiggles]

Hello AnnaChristine,

sorry to hear you are still feeling poorly,

I use enzymedica Digest ,

I notice you are already eating nuts and nuts can be very hard to digest at the best of times,

I found nuts gave me terribly bad indigestion and bloating and all the symptoms you mention,

so I cut them out completely,

I do hope to re introduce them at a later date though ,

I have also read that its far better to soak nuts and allow them to sprout a little first as this aids digestion , see link below

Open Original Shared Link

In the UK it is quite hard to find nuts that are free from cross contamination due to shared facility's

I am not too sure about the USA though ,

buying nuts in the shell will have less chance of c/c

Hmm, thinking perhaps all those other supplements may be a bit too much for you just yet ,

Perhaps you could try starting over with just your meat and veggies ,

then introduce some good digestive enzymes, then probiotics ,

keeping notes of how you feel ,

also when you buy any meat in a butchers or a deli counter , do be extra careful as marinades and ham crumbs can easily be transferred onto other cuts of meats ,

I do hope you will soon be feeling better,

Jiggles x x

[dilettantesteph]

I use Country Life zyme-aid and they seem to be working.  I can eat high fat things without diarrhea that give me diarrhea without the enzymes.  They contain enzymes that digest fat as well as a bunch of other stuff.  I chose that brand because it is certified gluten-free.

[Kamma]

I'm wondering if there is an issue with lower levels of cross contamination of the nut flours you are using.  They could be certified at 20 ppm but perhaps they contain lower levels of gluten.

 

When you remarked that you had been recently tested for ttg iga (?) levels, it showed you were fine.  Did that mean your numbers are decreasing and you are now in the 'normal range'?

[AnnaChristine18]

Yes, I've been tested and my iga levels have gone done immensely yet I feel worse than when I was still eating gluten. I use coconut flour and almond flour, both are made from nothing but ground up coconut or almond.

[Nikki2777]

I would try cutting out the nuts to see if that helps.  When I was first going gluten-free, I had a terrible time digesting nuts.

Sorry you are going through this -- I believe they and you will eventually find out what the problem is.

 

I'm assuming you've checked all marinades, are using gluten-free Soy Sauce, etc. if at all (I don't know much about Paleo, but figured I'd ask).;

 

Good luck.

[C-Girl]

I've been reading this Open Original Shared Link on the origins of autoimmune diseases like celiac, and it is clear through much research that these are caused by a disruption in the bacteria and other organisms, known as the "microbiome" that inhabit our bodies. It's 500 pages of scientific research, so it's not for the faint of heart.

 

The book details how autoimmune diseases are caused by our clean living, sadly. In countries where there are poor sanitation conditions and people get infected with worms, they get no celiac disease at all. It's supported both by epidemiology - the rise of asthma, celiac, MS, type 1 diabetes all parallel the removal of long-tolerated parasites that have been with us through our evolution.

 

In fact, the author himself, with autoimmune alopecia, goes to Mexico to get infected with helminths to see if it would cure his condition. In addition to allergies, type 1 diabetes, Hashimoto's thyroiditis, they also link autism, schizophrenia and indirectly, cancer to the changes in our microbiome. The North American diet, rife with sugars unprecedented in our evolutionary past, has encouraged a biome that loves to eat sugar - the bugs even make you crave sugar! In Japan, their bugs like seaweed. You are what you eat!

 

It's why probiotics have become such a big industry.  It's also why paleo and SCD help. What you need to do is try to restore the balance in your guts. We all need to, actually. You can take probiotics but you need to find ones that are guaranteed to be live. Not all yogurt has live cultures when sold. Find probiotics that are sold at room temperature in blister packs under nitrogen, in a cellulose capsule. Get 3-5 strains (apparently you don't need 50 different strains, or they start competing with each other) including Lactobacillus and Bifidus. The former helps clog the leaky gut and the latter helps to quell your hyperactive immune system.

 

I've found that sugars, be they natural or processed, trigger my gut symptoms, and after reading this book I'm convinced that those sugar loving bacteria are growing then, (which is why FODMAPS helps) and when it grows it causes symptoms.

 

So - eliminate sugar, take probiotics, give it some time to balance out and hopefully the symptoms will stop. I'm still working on the balancing out thing - giving up sugar is really hard - but I did see a marked change right after taking Culturelle.

 

Hope this helps.

[1desperateladysaved]

I have been trying to buy nuts that are processed by companies that only produce one product.  Green Valley Pecans is a company I recently purchased from.  I am super sensitive and did not react to them.

 

I have been scrubbing and washing nuts before grinding them.  I believe that grinding them helps to make them more digestible. SCD diet recommends them as being helpful to recover from celiac.  I avoid any and all nuts that disclose they are processed with wheat.  I watch out for other grains too, but some people with celiac don't need to.

 

I only listed Pecans, since that is the first nuts that I have found from a source without other products.  I have only tried to be more stringent recently.  If anyone knows of nuts from a source only having 1 variety please Pm me about it.

 

Dee

[dilettantesteph]

Yes, I've been tested and my iga levels have gone done immensely yet I feel worse than when I was still eating gluten. I use coconut flour and almond flour, both are made from nothing but ground up coconut or almond.

 

Are gluten containing products processed in the facility where the coconut flour and almond flour are processed?

[AnnaChristine18]

No of course not, I look at every single labe of everything i eat (and i don't eat very much processed foods) if it says anything along the lines of "Was manufactured on the same equipment as wheat" I'm not going to be stupid. It ISN'T cross contamination.