How Do I Keep Sane?

[Maggie07]

Hi all,

Rough night. Woke up at 4am to another allergic reaction to something I ate I am convinced. My daughter was terrified, I was so swollen. I am exhausted and feel worse than crap.

Finally pushed enough for my doc to order celiac blood testing.

He suspects my thyroid, and i'm waiting for an endocrinologist appointment.

Ultrasound scheduled for next week. Waiting is the hardest part.

I don't know what to eat and I am scared to eat! i am off work now because my hands are so badly cracking and swollen.

What can I do in the meantime to keep sane?

Any suggestions welcome 

[Georgia-guy]

I can't suggest anything to keep same, I am convinced I list my sanity a long, long time ago in a galaxy far, far away. Oh, wait, that's Star Wars. But anywho, I've never been sane.

[Georgia-guy]

But in all seriousness, it would probably be beneficial to start researching things you are going to have to change. Your diet, restaurants you go out to, is your family going gluten free with you or just you? If just you, then separate cooking equipment (pots, pans, strainers, etc) and prep area. In the short term it will likely make you more confused/list/upset/angry/ect, but in the long run. It would make the transition easier having an action plan set up to go gluten free. :-)

[mamaw]

Is  there  sane  people  left in our  society????/  Make  sure  you get  the total  celiac  panel  of  blood  work  &  the  same  for  your thyroid...  Thyroid  & celiac  go hand  in hand.....

Being  sane  is  over  rated  I think!!!!!  

[Wi11ow]

You probably have a lot to learn. When I started this, I read from morning to night for about 6 or 7 days non stop. What kept me sane was I watched a couple hours of a comedian on U tube, went outside and read a book, listened to music. I didn't have the energy to go for a walk, but getting away and stop thinking about the what ifs and how could I handle this, helped me.

 

Being afraid of food is the worst! Try a food diary. Maybe you can find a few foods that you don't react to. Write down what you eat and when. Once you find those, you can add one at a time.Then it's easier to figure out what is a problem. Waiting is the worst. Hang in there. I hope you can find some answers soon.

[elless]

I completely get where you are coming from.  I am going through a similar situation at the moment.  Almost 2 weeks waiting for blood tests. (The lab messed up). Ana tests came back positive, although my pcp pretty much just blew them off.  I have another round of blood tests next week along with a few breath tests.  A endoscopy and colonoscopy scheduled for mid June.  And having to eat gluten even though it makes me sick every time I do.  I have had my share of mini meltdowns.  The thing that is keeping me sane is reminding myself that every day I get one step closer to finally getting answers and feeling better.  And that I am so much closer now then I was when all this started 10 years ago. ( I was first diagnosed with hypothyroidism)   Just take it one day at a time.  Learn as much as you can.  I've been googling every question that has popped into my head for the last 2 months.  Also, good books, funny movies, great friends and warm hugs. 

I hope you get some answers soon.  Keep us updated.   

[GFinDC]

I completely get where you are coming from.  I am going through a similar situation at the moment.  Almost 2 weeks waiting for blood tests. (The lab messed up). Ana tests came back positive, although my pcp pretty much just blew them off.  I have another round of blood tests next week along with a few breath tests.  A endoscopy and colonoscopy scheduled for mid June.  And having to eat gluten even though it makes me sick every time I do.  I have had my share of mini meltdowns.  The thing that is keeping me sane is reminding myself that every day I get one step closer to finally getting answers and feeling better.  And that I am so much closer now then I was when all this started 10 years ago. ( I was first diagnosed with hypothyroidism)   Just take it one day at a time.  Learn as much as you can.  I've been googling every question that has popped into my head for the last 2 months.  Also, good books, funny movies, great friends and warm hugs. 

I hope you get some answers soon.  Keep us updated.   

 

Hi Elless,

 

Was your hypotyroidism due to Hashimoto's Thyroiditis?  Hashimoto's is also an autio-immune disease and sometimes occurs with celiac disease.  They test for Hashi's by checking TPO antibodies.

[elless]

Hi Elless,

 

Was your hypotyroidism due to Hashimoto's Thyroiditis?  Hashimoto's is also an autio-immune disease and sometimes occurs with celiac disease.  They test for Hashi's by checking TPO antibodies.

 

I've never been formally diagnosed with Hashimoto's however I've assumed that is what I had for a few years now.  When I was first diagnosed, I was only borderline.  I started on a .65 mg of synthroid and now I am up to a .1mg dose.  For about 6 years, I thought that all my symptoms were thyroid related.  But I've seen 3 Drs and they have all done Thyroid tests that came back ok.  I only really started thinking celiac for about a month now after I started narrowing down foods to see what was causing my stomach issues.  When I realized breads and things make my symptoms flare up I started looking into Celiac and saw the link between that and hashimotos.  I'm about 99% sure that the tests will come back positive for celiac.  Especially since auto-immune diseases run in the family on both sides.  Three of my aunts were just diagnosed with Lupus.  Right now its just about the waiting game, and feeling like crap.  I feel like its important to go through it and get the diagnoses that way if it does come back positive I can encourage family members to get tested.  I suspect my mom could have it as well.  (Lactose Intolerant, low iron, low blood sugar, low vitamin b12, joint pain)

[GFinDC]

I've never been formally diagnosed with Hashimoto's however I've assumed that is what I had for a few years now.  When I was first diagnosed, I was only borderline.  I started on a .65 mg of synthroid and now I am up to a .1mg dose.  For about 6 years, I thought that all my symptoms were thyroid related.  But I've seen 3 Drs and they have all done Thyroid tests that came back ok.  I only really started thinking celiac for about a month now after I started narrowing down foods to see what was causing my stomach issues.  When I realized breads and things make my symptoms flare up I started looking into Celiac and saw the link between that and hashimotos.  I'm about 99% sure that the tests will come back positive for celiac.  Especially since auto-immune diseases run in the family on both sides.  Three of my aunts were just diagnosed with Lupus.  Right now its just about the waiting game, and feeling like crap.  I feel like its important to go through it and get the diagnoses that way if it does come back positive I can encourage family members to get tested.  I suspect my mom could have it as well.  (Lactose Intolerant, low iron, low blood sugar, low vitamin b12, joint pain)

Hi Elless,

 

I don't think the doctors usually test for Hashimoto's when they test for other thyroid issues.  It would be something you'd have to prod them to do, since it is kind of a rare condition.  You are right, AI diseases do tend to run in families.  If you search on celiac disease and related condition or associated condition there are lists of related AI diseases.  Hopefully you will get a clear test result and your family members will listen.

 

Your mom does have symptoms that fit.  Probably a hydrogen breath test for lactose intolerance?  There's another breath test too but I forget what it is.  Oh yeah, alcohol!  Nope, there's another one besides that..   Anyway, if you can it would be a good idea to get paper copies of your test results for your personal records.  They might help convince the family members to get tested.

 

Have you tried Pepto Bismol for gut pain?  Peppermint is also helpful for getting gas out of the stomach.  By the way, welcome to the forum!

[elless]

Hi Elless,

 

I don't think the doctors usually test for Hashimoto's when they test for other thyroid issues.  It would be something you'd have to prod them to do, since it is kind of a rare condition.  You are right, AI diseases do tend to run in families.  If you search on celiac disease and related condition or associated condition there are lists of related AI diseases.  Hopefully you will get a clear test result and your family members will listen.

 

Your mom does have symptoms that fit.  Probably a hydrogen breath test for lactose intolerance?  There's another breath test too but I forget what it is.  Oh yeah, alcohol!  Nope, there's another one besides that..   Anyway, if you can it would be a good idea to get paper copies of your test results for your personal records.  They might help convince the family members to get tested.

 

Have you tried Pepto Bismol for gut pain?  Peppermint is also helpful for getting gas out of the stomach.  By the way, welcome to the forum!

 

I have the breath test for Lactose scheduled next week as well as the other one, the fructose breath test.  (Not alcohol.  Haha)  When all these tests are done, I will probably push for the Hashimotos as well as the Lupus test.  My ANA tests did come back positive. 

 

I have tried everything.  Peppermint, pepto, you name it, nothing helps. The only time I didn't have gas/bloating was the week and a half I went gluten free.   The minute I went back on the gluten I was sick with in 30 min.       And thanks for the welcome! 

[Georgia-guy]

I have tried everything. Peppermint, pepto, you name it, nothing helps. The only time I didn't have gas/bloating was the week and a half I went gluten free. The minute I went back on the gluten I was sick with in 30 min. And thanks for the welcome!

Elles, I had the same experience with nothing helping, then after it was mentioned by my nutritionist I did a reverse gluten challenge (officially coining that term) and began noticing improvements in a couple days, and definitely noticed them after a week. Then I went back to eating gluten after a week and a half and was in the ER with worse symptoms than before just to have discharge papers say "unexplained abdominal pain"...my primary complaint as a Dx, I could have done that myself. I'm still working on getting the insurance to pay for testing, but will likely have to go pay out of pocket at a walk-in lab.

[GFinDC]

I have the breath test for Lactose scheduled next week as well as the other one, the fructose breath test.  (Not alcohol.  Haha)  When all these tests are done, I will probably push for the Hashimotos as well as the Lupus test.  My ANA tests did come back positive. 

 

I have tried everything.  Peppermint, pepto, you name it, nothing helps. The only time I didn't have gas/bloating was the week and a half I went gluten free.   The minute I went back on the gluten I was sick with in 30 min.       And thanks for the welcome! 

 

 

Ha Ha!   Well, if the lactose is positive you can eliminate that one anyway.  Dairy can cause a lot of bloating and gas.  Inflating an inflamed, irritated gut can be a bit painful.  So eliminating dairy may help with the pain.  After the test of course.  They do make lactaid pills but I suggest you don't use those.  At least not for the first 6 months of the gluten-free diet, if you do start one.  It's better to just eliminate dairy for that time IMHO.  The nice thing is you don't have to wait for the celiac testing to complete before eliminating dairy.  You can eliminate it after the lactose test next week.  That may improve things a bit.

 

I used to get sick within 30 minutes of eating gluten also.  Might still but it's been a few years now so I don't know how fast my reaction would be today.  And I don't want to find out!

[elless]

Georgia-Guy:  I'm sorry you have to go through all that with your insurance to get a Dx.  I am very fortunate that I have great insurance.  Blood tests are free, copays are 10, and I have a 5000 hra that I can get anything medical reimbursed.  That's why I'm pretty much pushing to get it all done.  It's terrible how much people have to pay just to feel better when they get sick. 

 

GFinDC:  From what I understand, you don't need to be eating a full lactose night on the breath test.  I just have to drink 12 ounces of milk 3 hours before and fast from everything else.  For the most part I have eliminated most dairy.  Before sending me to the GI, my primary sent me home with directions to go lactose free for a month.  It helped a little, but I was still bloated/gassy/ constipated.  But I notice now when I have dairy and gluten together, I am in the bathroom pretty much consistently for 2 days.  Its terrible 

[Georgia-guy]

I used to get sick within 30 minutes of eating gluten also. Might still but it's been a few years now so I don't know how fast my reaction would be today. And I don't want to find out!

30 min is about how long it takes for gluten to start showing itself in me. That's why the gluten I eat while waiting for the tests is at night close to bed time. I drive all day long for work, and when I stop at the gas station to get some munchie food, they tend to look at me weird and ask why I'm staring at the labels for so long. (Normally it's the women on a "get ready for summer" diet who do that apparently.)

But as a side note, you don't think a little experiment would be fun? JK!

[31third]

Elles, I had the same experience with nothing helping, then after it was mentioned by my nutritionist I did a reverse gluten challenge (officially coining that term) and began noticing improvements in a couple days, and definitely noticed them after a week. Then I went back to eating gluten after a week and a half and was in the ER with worse symptoms than before just to have discharge papers say "unexplained abdominal pain"...my primary complaint as a Dx, I could have done that myself. I'm still working on getting the insurance to pay for testing, but will likely have to go pay out of pocket at a walk-in lab.

I havent been diagnosed with anything yet as I am waiting for my health insurance to start back up (money issues) but this happened to me recently where I went to the ER with nothing to show for after having abdominal pains and intense bloating.

 

They put xantec through and IV and sent me home. The anxiety from not knowing exactly what is going on with my body is a struggle and I'm trying to be positive though some nights I don't sleep much.

[Maggie07]

31Third: The anxiety from not knowing exactly what is going on with my body is a struggle and I'm trying to be positive though some nights I don't sleep much.-

I feel your pain...and everyone else's here! How long do these tests take?! The waiting is awful. Not only can I not stomach gluten, dairy or meat right now, but I have no appetite to eat anything. I fear the 30minutes afterwards: will I be sick? Bloated? Diarrhea or worse?

The worst part is trying to explain the skin rash, swelling and pain in my hands and legs.i don't even want to go outside. It's 26degrees everyone is wearing tshirt/shorts and I'm dressed for winter long pants and sweater bc I am cold and hide my arms/legs. No, what!s worse is the people you need as support saying gluten allergy is BS-why wasn't it around before.

Feeling so low right now.

[elless]

Hang in there Maggie. I know its tough right now, but stand your ground and you will get answers. We are all right there with you.

[GFinDC]

Georgia-Guy:  I'm sorry you have to go through all that with your insurance to get a Dx.  I am very fortunate that I have great insurance.  Blood tests are free, copays are 10, and I have a 5000 hra that I can get anything medical reimbursed.  That's why I'm pretty much pushing to get it all done.  It's terrible how much people have to pay just to feel better when they get sick. 

 

GFinDC:  From what I understand, you don't need to be eating a full lactose night on the breath test.  I just have to drink 12 ounces of milk 3 hours before and fast from everything else.  For the most part I have eliminated most dairy.  Before sending me to the GI, my primary sent me home with directions to go lactose free for a month.  It helped a little, but I was still bloated/gassy/ constipated.  But I notice now when I have dairy and gluten together, I am in the bathroom pretty much consistently for 2 days.  Its terrible 

 

Hah! Yes it is terrible!  I used to have several Uncle John's Bathroom Reader books for the long spells of intense contemplation.  When you are getting rid of useless drivel at a prodigious rate it's good to replace it right away!   The dairy-free helping is a sign of something.  Lactose intolerance is somewhat common in new celiacs because the enzymes that digest lactose are made by the villi lining the gut.  Or rather it was made by the villi before they were wiped out/eroded by antibodies attacks.

 

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30 min is about how long it takes for gluten to start showing itself in me. That's why the gluten I eat while waiting for the tests is at night close to bed time. I drive all day long for work, and when I stop at the gas station to get some munchie food, they tend to look at me weird and ask why I'm staring at the labels for so long. (Normally it's the women on a "get ready for summer" diet who do that apparently.)

But as a side note, you don't think a little experiment would be fun? JK!

 

Hmm, let me stink about it.  I think NO, I don't want to test it!  Sassin-frassin Georgia-guy!  (Insert several colorful Homerism here). 

 

Yep tho, within 30 minutes I would start getting some rather nasty smellin belches from my pie digester (stomach).  I always knew then that I was in trouble and it was going to be a bit of a ride.  I don't miss those days at all!

[Maggie07]

Hi all,

 

Still waiting for results...the rash and itching is all over. Last night my legs were so swollen and painful I could hardly walk!

Face is still puffy and itchy with the same rash. Ugh. I have become a hermit...going outside is too embarrassing and people just look at me strange. Explaining everything is getting too tiresome.

I slept ALL DAY today. What is up with that? So not like me.

 

Doctor just called...blood work does not show any autoimmune disorder and thyroid is normal. 

What does that mean? I still have no answers!

Guess I am going back to him tomorrow for an explaination...how can I fix this?!