New Here And Struggling

[Celiacandme]

Hi Everyone,

 

I'm new to the forum. I've been gluten free since 10/26/2013 and am still struggling. I have confirmed celiac's disease from both blood work and biopsies taken during an endoscopy.

 

I didn't have much help in the beginning besides to just stop eating gluten. I did that immediately with no issues and I am not getting cross contamination. It is not in my house. I did replace all necessary kitchen items.. collanders, toaster, etc. Got new butter, jams, etc. I don't lick envelopes and it is not in my toothpaste, lipstick so on and so forth.

 

I'm struggling. Some symptoms have gotten worse. I am still ill in the bathroom every morning. I feel internal inflammation all the time. I'm waiting for appointments with rheumatology (later in March) and endocrinology (beginning of April) because of various symptoms. A neurologist is also working on ruling out MS.

 

I cut out dairy last month (not in the beginning/was told it was not necessary) and now I've pretty much cut out everything else (rice, potato, soy) because I'm desperate to feel better. I've been eating plain fruit, veggies, meat - no seasonings/sauce. Chicken broth. Coffee (yes, it is gluten free) once in the morning and green tea or chamomile. Because of my vitamin D level and ferritin level I am taking the following each day Calcium w vitamin D3 twice a day, a multi vitamin, iron, b-12. Also on 20mg of omeprazole every morning because of my esophagus. I also drink Kefir probiotic smoothie twice a day. (Could that maybe be making me worse?! Just a thought that came to me today)

 

Along with celiac's disease so far I've been diagnosed with Barrett's Esophagus and was told I have osteomalacia.

 

I could share the lifetime of issues (migraines, miscarriages, difficult menstrual cycles, etc, etc) that now seem eye opening but the above are the basics.

 

Should I really still be struggling so much? This has been so difficult. I wish a doctor could tell me that I'm going to be okay.

 

Thank you for any responses that come my way. Looking forward to getting to know you.

 

~Julie

 

edited to add more: my Celiac diagnosis came after a very long year of many, many doctor appts. I lost 38lbs from Feb until diagnosis, I would fall for no reason, I have neuropathy, terrible periods, mood swings near period and ovulation, not sleeping well, night sweats, anemia, difficulty with things I was able to do before, completely beat all the time, skin issues (don't have DH), joint, muscle, vein issues... I started going to the doctor religiously in the fall of 2012 and by the beginning of Oct 2013 still did not have a diagnosis besides to reduce stress and take care of myself.

[bartfull]

Hi and welcome to the forum!

 

It's possible that you are still healing. For some of us it has taken two or more years. I think the longer you had celiac, the longer it may take to heal.

 

It's also possible you are having issues with other foods. I see you have cut out a lot, but some of the veggies might still be giving you trouble. Some of us can't eat corn, some can't eat legumes, some have trouble with nightshades. I think you are on the right track, seeing doctors for more testing. In the meantime, you should keep a food and symptom diary.

 

Write down everything you eat each day and your symptoms. Maybe start by eliminating the corn, legumes and nightsdhades. After a week or two, if you're feeling better, add one of them back, eat this food for a few days and see how you feel.

 

Also, it sounds like you have checked everything for gluten, but how about medications and supplements? Most pills use corn as a filler, but some do use gluten.

 

Oh yeah, you don't have to worry about envelopes. That is an urban myth. (They DO however, often contain corn.)

[Celiacandme]

Hi and welcome to the forum!

 

It's possible that you are still healing. For some of us it has taken two or more years. I think the longer you had celiac, the longer it may take to heal.

 

It's also possible you are having issues with other foods. I see you have cut out a lot, but some of the veggies might still be giving you trouble. Some of us can't eat corn, some can't eat legumes, some have trouble with nightshades. I think you are on the right track, seeing doctors for more testing. In the meantime, you should keep a food and symptom diary.

 

Write down everything you eat each day and your symptoms. Maybe start by eliminating the corn, legumes and nightsdhades. After a week or two, if you're feeling better, add one of them back, eat this food for a few days and see how you feel.

 

Also, it sounds like you have checked everything for gluten, but how about medications and supplements? Most pills use corn as a filler, but some do use gluten.

 

Oh yeah, you don't have to worry about envelopes. That is an urban myth. (They DO however, often contain corn.)

Thank you for the quick reply. I have cut out corn as well. Will have to try legumes. I do have a diary of all my food and symptoms. My medication/supplements have all been checked and are definitely gluten free. I've had a couple prescriptions the past few months I couldn't pick up because they couldn't confirm they were gluten free.

 

That is funny - I didn't realize the envelope thing was an urban myth.

 

Does it seem that many with celiac's get an additional autoimmune diagnosis shortly after or not necessarily? Does anyone know if celiac disease can cause high ANA levels?

 

By the way, my celiac panel was drawn again yesterday. It will take a week to come back but I'm interested to see the difference from October. *fingers crossed*

 

I've had so much anxiety with all of this.

[bartfull]

Well, if you are seeing a rheumatologist, I assume it's because of joint pain. Nightshades can cause that. I have to limit them because they are cumulative. I can eat a baked potato a week, or a handful of potato chips a day. Any more than that and I start with the stiff and painful fingers (and back).

 

I think it may seem like a lot of us develop other intolerances because we stick around this board looking for answers. I think the majority of celiacs who come here come to learn, get helpful tips on the diet, feel better, and they see no reason to keep posting.

[1desperateladysaved]

Welcome!  Did you have symptoms for l year or did you have symptoms earlier, but they became overwhelming for one year?  I remember the overwhelming year before my diagnosis.  It did take some time for my body to heal, but I feel much better.  I did have to consider other food intolerances and have eliminated many of the foods that you mentioned.

 

I don't know what it is in envelopes, but I don't lick them anymore!  I just use a sponge or my children lick it for me!

 

D

[dilettantesteph]

Learning to deal with condition can be like getting a master's degree.  Do you eat gluten-free foods?  They can contain no more than 20 ppm gluten to be labelled gluten free.  This study was used to determine that was safe:  Open Original Shared Link

Reading it, you see that one study participant out of the 26 celiacs tested, suffered a clinical relapse.  While they say that the amount of gluten allowed in gluten-free foods are safe for the vast majority of celiacs, one out of 26 in the study did not find it safe.  

 

In another study, some celiacs suffering from continuing symptoms did better on a diet that excluded trace gluten contamination: 

Open Original Shared Link

I suggest that you try a diet more like the one described in this study to see if that helps.

I have found that I need to eliminate a few more things and that keep a food/symptom journal has been helpful to determine which foods are safe.

It has been well worth the effort in terms of improvement in my health.  

Best wishes.

[frieze]

hmm what happened to the "quote" function?  anyway, make sure your B12 is on an empty stomach, your iron separate from your calcium.  If you are taking a Calcium/D supplement from the store, ie , Calcium 600, D400 ,  that is not going to do anything for a low D.

[Gemini]

Thank you for the quick reply. I have cut out corn as well. Will have to try legumes. I do have a diary of all my food and symptoms. My medication/supplements have all been checked and are definitely gluten free. I've had a couple prescriptions the past few months I couldn't pick up because they couldn't confirm they were gluten free.

 

That is funny - I didn't realize the envelope thing was an urban myth.

 

Does it seem that many with celiac's get an additional autoimmune diagnosis shortly after or not necessarily? Does anyone know if celiac disease can cause high ANA levels?

 

By the way, my celiac panel was drawn again yesterday. It will take a week to come back but I'm interested to see the difference from October. *fingers crossed*

 

I've had so much anxiety with all of this.

Yes, Celiac Disease can be the cause of an elevated ANA.  That test is not very specific for any one AI disease but a test for general inflammation.  It just confirms that you have inflammation in your body.

 

Do not be alarmed if your antibody testing comes back still elevated a bit.  It can take a year or longer for things to normalize. If the numbers have come down, you are heaed in the right direction.  It took me 3 years to completely rid myself of all symptoms and I was sick for many years also.  If you have been good about checking what you ingest for gluten, then don't become paranoid about it.  Wait to see what the antibody testing shows because if the numbers are falling, it means you are doing a good job of checking what goes in your mouth.  It really can take a long time to heal. I am extremely sensitive to small amounts of gluten and have done well with the diet but it took awhile for everything to calm down. That includes the 3 other AI diseases I have as well as Celiac.

[Celiacandme]

bartfull - Joint pain is one of the reasons I'm seeing a rheumatologist. Also skin changes/issues, etc. I've recently cut out nightshades to see if it helps. *fingers crossed*

I love how your signature says you can still play your guitar and that is all that matters.

 

1desperateladysaved - I did have symptoms earlier but I meant that the year prior to diagnosis were the most overwhelming ones. Always ill, lost 38lbs, life was not my normal at all due to various symptoms.

 

dilettantesteph - I did eat some gluten free foods in the beginning (Nov) but don't anymore. I'm truly just having plain fruits, vegetables, meat, broth at this point. Thank you for the well wishes.

 

 

frieze - I tried the multi quote function and couldn't get it to work either! Thank you - I didn't realize B-12 should be on an empty stomach. Other supplements are separated like you mentioned.

 

Gemini - Thank you. It is helpful to hear and be reminded that this all takes time. Do you mind me asking which other AI you have or which came first - celiacs or the others?

 

--------------------

 

I really appreciate all the responses! Thank you all!

~Julie

[GFinDC]

Hi,

 

You may think you have stopped dairy, but kefir is made from dairy (usually), so you may not be as dairy-free as you think.

 

Open Original Shared Link

Kefir, keefir, or kephir (Open Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared Link Open Original Shared Link),^{Open Original Shared Link} alternatively kewra, talai, mudu kekiya, milk kefir, or búlgaros, is a Open Original Shared Link made with kefir "grains" (a yeast/bacterial fermentation starter) and has its origins in the north Open Original Shared Link.^{[Open Original Shared Link]} It is prepared by Open Original Shared Link Open Original Shared Link, Open Original Shared Link, or Open Original Shared Link milk with kefir grains. Traditional kefir was made in Open Original Shared Link bags that were hung near a doorway; the bag would be knocked by anyone passing through the doorway to help keep the milk and kefir grains well mixed.

[NoGlutenCooties]

Just wanted to add that I read somewhere on this forum that the antibodies have a half-life of about 3 - 4 months.  Which means at 3 - 4 months you still have approx. half of the antibodies that you started out with when you first went gluten free.  If you had a very high number of them, it can take several months or even a year or two to get rid of them all.  And while this is going on, your body is also trying to heal while also trying to adjust to what possibly amounts to a very different diet.  There is a lot going on - and all of it takes nutrition, rest, water, and time. 

[Celiacandme]

Hi,

 

You may think you have stopped dairy, but kefir is made from dairy (usually), so you may not be as dairy-free as you think.

 

Open Original Shared Link

Kefir, keefir, or kephir (Open Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared Link Open Original Shared Link),^{Open Original Shared Link} alternatively kewra, talai, mudu kekiya, milk kefir, or búlgaros, is a Open Original Shared Link made with kefir "grains" (a yeast/bacterial fermentation starter) and has its origins in the north Open Original Shared Link.^{[Open Original Shared Link]} It is prepared by Open Original Shared Link Open Original Shared Link, Open Original Shared Link, or Open Original Shared Link milk with kefir grains. Traditional kefir was made in Open Original Shared Link bags that were hung near a doorway; the bag would be knocked by anyone passing through the doorway to help keep the milk and kefir grains well mixed.

 

 

Just wanted to add that I read somewhere on this forum that the antibodies have a half-life of about 3 - 4 months.  Which means at 3 - 4 months you still have approx. half of the antibodies that you started out with when you first went gluten free.  If you had a very high number of them, it can take several months or even a year or two to get rid of them all.  And while this is going on, your body is also trying to heal while also trying to adjust to what possibly amounts to a very different diet.  There is a lot going on - and all of it takes nutrition, rest, water, and time. 

 

Hi,

 

You may think you have stopped dairy, but kefir is made from dairy (usually), so you may not be as dairy-free as you think.

 

Open Original Shared Link

Kefir, keefir, or kephir (Open Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared LinkOpen Original Shared Link Open Original Shared Link),^{Open Original Shared Link} alternatively kewra, talai, mudu kekiya, milk kefir, or búlgaros, is a Open Original Shared Link made with kefir "grains" (a yeast/bacterial fermentation starter) and has its origins in the north Open Original Shared Link.^{[Open Original Shared Link]} It is prepared by Open Original Shared Link Open Original Shared Link, Open Original Shared Link, or Open Original Shared Link milk with kefir grains. Traditional kefir was made in Open Original Shared Link bags that were hung near a doorway; the bag would be knocked by anyone passing through the doorway to help keep the milk and kefir grains well mixed.

 

Thank you for sharing this info. I didn't have any of the kefir yesterday and am going to stay away to see if it helps. Perhaps try a probiotic in pill form.

 

Just wanted to add that I read somewhere on this forum that the antibodies have a half-life of about 3 - 4 months.  Which means at 3 - 4 months you still have approx. half of the antibodies that you started out with when you first went gluten free.  If you had a very high number of them, it can take several months or even a year or two to get rid of them all.  And while this is going on, your body is also trying to heal while also trying to adjust to what possibly amounts to a very different diet.  There is a lot going on - and all of it takes nutrition, rest, water, and time. 

 

True - good reminder. Thank you.

 

This brings another question to mind...

 

Does anyone know if you are retested for...

 

Deamidated Gliadin Abs, IgA

Deamidated Gliadin Abs, IgG

t-Transglutaminase (tTG) IgA

t-Transglutaminase (tTG) IgG

Endomysial Antibody Negative Negative

IgA

 

after 4 months gluten free and the numbers are better/normal would the above still ring true? Could your numbers look better but could your body still be reacting to getting gluten out of your system/adjusting to new lifestyle of eating? Could you still have the wide array of symptoms you've had, whatever they have been for you?

 

[HavaneseMom]

Hi Celiacandme,

I was diagnosed and have been gluten free for about the same amount of time as you. My numbers started off pretty high and I was retested at 3 months. Only one of my numbers was still elevated, but I am still struggling like you. I am pretty sure it will take my body a couple of years to heal, since I remember symptoms as early as 3 years old and wasn't diagnosed until 40. It sounds like you were very sick when diagnosed, so I would think your body is still healing and adjusting. It is so hard to be patient when we are doing everything we can to be healthy.

A nurse at my GI doctor explained to me that it also takes so long to heal because our digestive system never gets to rest. She said if you break a bone they put a cast on it and you rest it and it heals, but with the digestive system it has to constantly keep working and processing, so it never gets a chance to rest and takes a very long time to heal. That made a lot of sense to me.

Hang in there and I hope you feel better soon.

[notme]

 

Thank you for sharing this info. I didn't have any of the kefir yesterday and am going to stay away to see if it helps. Perhaps try a probiotic in pill form.

 

if you do try a probiotic, don't be alarmed if your guts sound like wwIII is going on in there for a little while, lolz - i was advised to take one and then i got scared when my guts started making all these wierd noises so i stopped taking them.  then i found out that it takes a little while for everything to get situated and your gut flora to start repopulating - the noisiness and grumbling were normal!   just so ya know  

[Celiacandme]

Hi Celiacandme,

I was diagnosed and have been gluten free for about the same amount of time as you. My numbers started off pretty high and I was retested at 3 months. Only one of my numbers was still elevated, but I am still struggling like you. I am pretty sure it will take my body a couple of years to heal, since I remember symptoms as early as 3 years old and wasn't diagnosed until 40. It sounds like you were very sick when diagnosed, so I would think your body is still healing and adjusting. It is so hard to be patient when we are doing everything we can to be healthy.

A nurse at my GI doctor explained to me that it also takes so long to heal because our digestive system never gets to rest. She said if you break a bone they put a cast on it and you rest it and it heals, but with the digestive system it has to constantly keep working and processing, so it never gets a chance to rest and takes a very long time to heal. That made a lot of sense to me.

Hang in there and I hope you feel better soon.

 Wow... our timeline is very close. I also have GERD (and Barrett's), Vit D def, Iron def anemia, had TMJ in January. Also had pleurisy. I was 35 at diagnosis. So just a few years behind you. Anyway, thank you for sharing that story and for the well wishes. That makes sense. I hope you feel better soon, too.

 

 

if you do try a probiotic, don't be alarmed if your guts sound like wwIII is going on in there for a little while, lolz - i was advised to take one and then i got scared when my guts started making all these wierd noises so i stopped taking them.  then i found out that it takes a little while for everything to get situated and your gut flora to start repopulating - the noisiness and grumbling were normal!   just so ya know

 

 

Thank you for the warning! Any recommendations on a good probiotic? Before November I knew zilch about them. I do have one that I purchased but am curious if anyone recommends any in particular.

[notme]

i use culturelle - it is doesn't contain synthetic colors (which i have problems with) preservatives, dairy, lactose, milk, yeast, wheat, gluten or soy <soy is *not* my friend.   it takes about 2 weeks to get everything settled down.  i still take 2x per day, one in the am and one before bed.  

 

it does take a long time, i still have bad days for no reason at all, seemingly, but overall my quality of life is definitely improved.  i figure it took a long time to do that much damage that i was dying from malnutrition.......  hang in there, kiddo.  hope you feel better! 

[Celiacandme]

i use culturelle - it is doesn't contain synthetic colors (which i have problems with) preservatives, dairy, lactose, milk, yeast, wheat, gluten or soy <soy is *not* my friend.   it takes about 2 weeks to get everything settled down.  i still take 2x per day, one in the am and one before bed.  

 

it does take a long time, i still have bad days for no reason at all, seemingly, but overall my quality of life is definitely improved.  i figure it took a long time to do that much damage that i was dying from malnutrition.......  hang in there, kiddo.  hope you feel better! 

 

Thank you. I appreciate that. I will have to check out culturelle!

[NoGlutenCooties]

after 4 months gluten free and the numbers are better/normal would the above still ring true? Could your numbers look better but could your body still be reacting to getting gluten out of your system/adjusting to new lifestyle of eating? Could you still have the wide array of symptoms you've had, whatever they have been for you?

 

I would say yes.  Because your body isn't just reacting to the presence of antibodies, it is dealing with severe nutrient deficiencies.  So just like it takes a starvation victim time to get back to normal, it takes awhile to fully heal from having Celiac.