Now What?

[Lisa Joy]

I, like many am stunned. I never heard of Celiac disease until I received a call re: what I thought was a routine blood test telling me I had it. And, that I should find out about and begin a gluten free diet.

Not big deal I thought until I began to research. No wonder those with Celiac are depressed. There is very little positive news.

So, the blood test says I have it, but I haven't seen the GI yet and won't until July 31. In the meantime what?? Gluten free? Use this as a reprieve to eat anything with gluten I can find?

In the meanwhile I really want to begin to feel well again. Frankly, it has been so long I can't remember when I didn't have weird stuff going on, but most recently more and more frequent sores in my mouth that are more painful than I can describe.

I never associated all the intestinal issues with the depression, irritability (I don't know why I'm so angry I could spit nails!), muscle and joint pain and general sleeplessness for nights on end.

I'd appreciate any input from those of you who have been here. What now?

Thanks.

[Guest j_mommy]

I was in your same boat!!! I had the blood tests..and got the call saying I had celiac. I had never heard of it either! My blood results came in april 1st and my biopsy wasn't until may 15! I wanted to know the damage that was done to teh villi, so I ate gluten until after my biopsy and then went gluten-free.And yes I used that month as a time to get my "last meals" in!

Gluten free is daunting at first......but let me tell you.....I have never felt so good in my whole life!!!!!!!! Geting this diagnosis was a blessing. I FINALLY knew what was wrong and how to fix it. The diet can be difficult but in the end it is sooooo worth it! I'm 24 and I finally have energy after I come home from work to play with my two year old. I no longer feel like an 80 yr old in a 24 yr old body!!!!

It's tuff at first and you'll make mistakes but the road gets easier as you become an "old pro"! Promise!!!

This board has been a life saver to me! I went from shock to anger to overwhelmed to relief and a realization that I can do this!!!

I recommend: Living GLuten Free for dummies and Celiac Disease: a Hidden epidemic!

Good Luck and welcome to teh board!

[Lisa Joy]

I was in your same boat!!! I had the blood tests..and got the call saying I had celiac. I had never heard of it either! My blood results came in april 1st and my biopsy wasn't until may 15! I wanted to know the damage that was done to teh villi, so I ate gluten until after my biopsy and then went gluten-free.And yes I used that month as a time to get my "last meals" in!

Gluten free is daunting at first......but let me tell you.....I have never felt so good in my whole life!!!!!!!! Geting this diagnosis was a blessing. I FINALLY knew what was wrong and how to fix it. The diet can be difficult but in the end it is sooooo worth it! I'm 24 and I finally have energy after I come home from work to play with my two year old. I no longer feel like an 80 yr old in a 24 yr old body!!!!

It's tuff at first and you'll make mistakes but the road gets easier as you become an "old pro"! Promise!!!

This board has been a life saver to me! I went from shock to anger to overwhelmed to relief and a realization that I can do this!!!

I recommend: Living GLuten Free for dummies and Celiac Disease: a Hidden epidemic!

Good Luck and welcome to teh board!

[Lisa Joy]

I was in your same boat!!! I had the blood tests..and got the call saying I had celiac. I had never heard of it either! My blood results came in april 1st and my biopsy wasn't until may 15! I wanted to know the damage that was done to teh villi, so I ate gluten until after my biopsy and then went gluten-free.And yes I used that month as a time to get my "last meals" in!

Gluten free is daunting at first......but let me tell you.....I have never felt so good in my whole life!!!!!!!! Geting this diagnosis was a blessing. I FINALLY knew what was wrong and how to fix it. The diet can be difficult but in the end it is sooooo worth it! I'm 24 and I finally have energy after I come home from work to play with my two year old. I no longer feel like an 80 yr old in a 24 yr old body!!!!

It's tuff at first and you'll make mistakes but the road gets easier as you become an "old pro"! Promise!!!

This board has been a life saver to me! I went from shock to anger to overwhelmed to relief and a realization that I can do this!!!

I recommend: Living GLuten Free for dummies and Celiac Disease: a Hidden epidemic!

I just finished reading Gluten free for dummies. That was not reassuring, but at least I know what I am dealing with.

Thanks for the reply. I was up one night and couldn't sleep, and worried about what to do and when to do it. I prayed God would give me a straight answer about what I should do (gluten or no gluten) and I found this forum. I felt much better knowing that there are others who can answer some of my questions.

Lisa

Good Luck and welcome to teh board!

[Lisa Joy]

This message board is quite confusing to me.

Any way thanks for the reply. I have read Gluten Free for Dummies, and though intimidated at least now know what I am dealing with.

I hope to get more input, but am glad to know there are others that are in this same place--not knowing what to do next.

Gluten free? Not gluten free? Do I really have it? I must because I feel so crummy all the time, but this just doesn't seem possible.

Who would think people have such a HUGE reaction to a change in diet??

[Ursa Major]

Lisa, this is the deal: If you start the gluten-free diet now, before your biopsy, your villi will heal, and your biopsy might end up giving you a false negative. In which case your doctor may tell you that you don't have celiac disease after all, because they often declare the biopsy to be the most important evidence (even though the damaged parts are easily missed, resulting in false negatives, anyway).

If you want to do the biopsy, you need to keep eating gluten until it is taken. Then immediately, before getting the results, start the gluten-free diet.

Or, if you don't want to stay sick for another month, try the gluten-free diet, and if it makes you feel better, you would really have the evidence anyway, along with the positive blood work, that tells you it is celiac disease. In which case you may want to cancel the biopsy. It is your choice, no doctor can tell you that you have to stay on gluten unless you choose to.

In the meantime, if you keep eating gluten for that month until the biopsy, you can already eliminate all dairy since it is likely a problem at this point anyway. That way you may feel a little bit better now.

[cruelshoes]

Lisa - Ursa Major is correct. You must continue to eat gluten until the endoscopy is complete if you choose to go that route. Otherwise you risk skewed test results, and may never get the answers you need. From all the research I have done, a false positive on the bloodwork is very rare. If your bloodwork says you have celiac disease, you very likely do. I would encourage you to go ahead with the biopsy so you can have a full picture of your condition.

I was completely blown away when I got my diagnosis. THe first time I went to the grocery store post diagnosis, I just walked up and down the aisles and sobbed! They must have thought I was an absolute lunatic! Believe me, it does get better. My family and I have lots of delicious foods to eat, and we are normal people in every way.

Good luck at your appointment!

[Lisa Joy]

Thanks for the replies and the encouragement and advice.

I haven't noticed an intolerance with dairy, so I guess that's good.

I wil just continue to read and get info from this forum and other sources until my appt.

The worst for me has been the mouth sores and that my RLS has increased because of iron deficiency. And, of course the intestinal stuff which I had come to accept as normal.

thank God I am the Executive Director of my organization so I have my own office. I can light candles and people think I'm doing it for atmosphere;not to cover up the yucky smell from uncontrollable gas. This has all been so embarrassing and depressing. I used to have TONS of energy, and have noticed the past couple of years esp that I am tired ALL THE TIME.

NEver in my life have I said I'd rather stay home...

That and checking the ingredients in everything is enough to put one over the edge. I LOVE to eat out, and feel that is going to come to a screeching halt.

Has anybody stayed at the Grand Canyon lodge and found safe foods?? We planned and paid for a vacation there in August, so now I am panicky about that too.

I found this forum late one night when I couldn't sleep and was praying for answers about what to do. I'm very high maintenence in my marriage right now, and that feels out of control too. So, I am very thankful God led me to this group-

Just knowing others are confused too helps. That sounds very self-serving, but I was thinking I was the only one who couldn't get straight answers. My Dr's office called me and told me to look on the internet about Celiac and gluten free diets. When I did and called her back in a panic she told me not to believe everything I read on the internet. I wanted to reach through the phone...

Blessings to you all.

[grey]

I too got the phone call ... and didn't really think about the GI symptoms as being that abnormal. Very inconvenient and extremely uncomfortable ... I got directed to the internet for info as well. (and then the conflicting don't believe everything your read.) I'm still looking for straight answers!

In between the blood test and the biopsy, I did a 'gluten farewell tour' ... cupcakes, pizza, McDonalds. I haven't missed anything so far in terms of foods. Educating yourself is key - you really have to be your own advocate with this. Another good book is Danna Korn's Wheat Free, Worry Free (she wrote the dummies book, this has more detail; try your public lbirary)

I didn't noticed a dairy intolerance before going gluten-free, but it was very clear after. I miss the dairy (cheese and ice cream) more than the gluten.

Going out to dinner still scares me and I went gluten-free at the end of May. I used to eat out several times a week, so it's been a HUGE change-goodbye social life, such as it was. I had to go the hospital for some complications and they had me start eating red meat again too.

One thing you might do that definately helped me was cut out raw vegetables; that improved my gi symptoms, especially pain, because I just am not healed enough for them yet. I eat a lot of cooked veggies. I eat easy-to-digest fruits, but after a terrible experience or two, avoid apples and citrus.

I'm very very glad I got the biopsy. It made dealing with my insurance co re hospitalization easier and it has made gluten-free easy (conceptually, anyway). Knowing how seriously my gut is injured (total villous atrophy and inflammation, etc etc) helps me to understand the severity of celiac disease more than just intellectually. There's no temptation to cheat, no doubt in my mind this is the right dx, and the right thing to be doing. It's also helped me to ease up on myself - well, sometimes - because I have tendency to keep going when I should rest & take care of myself and to beat myself up. It's really helped me to fight back against all the years of people and doctors saying I was just lazy, depressed, or a hypochondriac.

Oh, and, to stop expecting that as my asinine 1st gastro said, I'd be fine in 2 weeks. Some people have a very quick rxn to gluten-free. Mine has been very slow - but I keep picturing the villi and have faith!

Not everyone has these finanacial or emotional needs; I thought it might be useful to hear why I'm glad I got the biopsy.

Have they checked your various vitamin and mineral levels lately? (other than iron?) Mine were EXTREMELY low all round, some undectable. That's something your md should definately do and I recommend pushing for it if they resist.

Good luck!! Finding out what's wrong is a massive step. These fora are wonderful for support and help.

(and sorry so long...)

best,

grey

Thanks for the replies and the encouragement and advice.

I haven't noticed an intolerance with dairy, so I guess that's good.

I wil just continue to read and get info from this forum and other sources until my appt.

The worst for me has been the mouth sores and that my RLS has increased because of iron deficiency. And, of course the intestinal stuff which I had come to accept as normal.

thank God I am the Executive Director of my organization so I have my own office. I can light candles and people think I'm doing it for atmosphere;not to cover up the yucky smell from uncontrollable gas. This has all been so embarrassing and depressing. I used to have TONS of energy, and have noticed the past couple of years esp that I am tired ALL THE TIME.

NEver in my life have I said I'd rather stay home...

That and checking the ingredients in everything is enough to put one over the edge. I LOVE to eat out, and feel that is going to come to a screeching halt.

Has anybody stayed at the Grand Canyon lodge and found safe foods?? We planned and paid for a vacation there in August, so now I am panicky about that too.

I found this forum late one night when I couldn't sleep and was praying for answers about what to do. I'm very high maintenence in my marriage right now, and that feels out of control too. So, I am very thankful God led me to this group-

Just knowing others are confused too helps. That sounds very self-serving, but I was thinking I was the only one who couldn't get straight answers. My Dr's office called me and told me to look on the internet about Celiac and gluten free diets. When I did and called her back in a panic she told me not to believe everything I read on the internet. I wanted to reach through the phone...

Blessings to you all.

[Lisa Joy]

Grey,

Well, I am glad to learn I am not the only one to get mixed messages even from my Dr.

I appreciate the info. This is all new and difficult. Just the idea of never having another plate of pasta or good bread is enough to send me over the edge.

Now, I'm learning that I have to watch everything, and it is all too much really.

As you say, I am doing my fair-well tour right now. Pizza last night and all the soft yeasty bread I can manage.

Still, I know this is not good for me, and I'm sure not getting better in the meantime.

What started this whole thing for me was an extended period of extreme stress that resulted in my mouth breaking out in what the Urgent Care Drs told me (three of them) was the herpes simplex virus (I had Chicken Pox as a kid). However, I would not respond to traditional treatment. Unbelievable pain!! Finally, my Dr's PA ordered a blood panel. Ta-Da! Celiac, iron deficiency. I don't know about the other stuff, and it is a good idea to have that checked too.

I am taking mostly liquid supplements and vitamins now since they absorb faster and more efficiently.

This explains why I began getting nose bleeds, several years ago, and migraines too. And, why I am tired all the time yet seldom am able to get a full restful night's sleep. My bones and muscles ache. I too began to wonder if there wasn't something wrong in my head.

now it all comes together, but I sure wish it didn't....

I don't really now what it is to feel well. I haven't felt well in a long time, but being an "A" personality I just keep pushing away. And feeling very angry without knowing why and depressed when nothing is really wrong.

So much to learn and I really don't want to hear anymore.

Again thanks for your response.

[Karen B.]

I, like many am stunned. I never heard of Celiac disease until I received a call re: what I thought was a routine blood test telling me I had it. And, that I should find out about and begin a gluten free diet.

Not big deal I thought until I began to research. No wonder those with Celiac are depressed. There is very little positive news.

So, the blood test says I have it, but I haven't seen the GI yet and won't until July 31. In the meantime what?? Gluten free? Use this as a reprieve to eat anything with gluten I can find?

In the meanwhile I really want to begin to feel well again. Frankly, it has been so long I can't remember when I didn't have weird stuff going on, but most recently more and more frequent sores in my mouth that are more painful than I can describe.

I never associated all the intestinal issues with the depression, irritability (I don't know why I'm so angry I could spit nails!), muscle and joint pain and general sleeplessness for nights on end.

I'd appreciate any input from those of you who have been here. What now?

Thanks.

Lisa, the diagnosis of Celiac was very good news for me -- my doctor had prepared me for colon cancer. Also, depression is one of the symptoms of Celiac and it gets better when you've been gluten-free for awhile. The great thing about having Celiac is how much your health improves once you go gluten-free. It's difficult at first because there are a lot of details to absorb but I can honestly say after nearly 4 years, it's not as bad as it seems at first. I find Lara bars are great to keep in your desk for those times when you're wrapped up in something and can't get away.

If you think you can hold out a month, I would contiue to eat gluten and get the biopsy. It can make a difference with insurance companies and when traveling to have a letter from your doc saying you have an official diagnosis. You might ask your doc if they can have the endoscopy moved up but scheduled later in the day. My doc was able to do that but she thought I had colon cancer. They did my endoscopy at 1:30 in the afternoon instead of early in the morning. You really will notice a major difference in the gastro effects, aches, irritability etc. when you go gluten-free.

[Karen B.]

I appreciate the info. This is all new and difficult. Just the idea of never having another plate of pasta or good bread is enough to send me over the edge.

---

As you say, I am doing my fair-well tour right now. Pizza last night and all the soft yeasty bread I can manage.

Tinkyada pasta is gluten-free and no one at my office has been able to taste the difference.

And I just had a great piece of yeast bread, Pamela's Wheat Free Bread. It's not hard to make. If you get in touch with your local Celiac group, they can help you through this transition.

A List of Local Celiac Disease Support Groups/Chapters

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

Before my diagnosis, my co-workers couldn't understand why I could drink a Starbucks vente mocha valencia (3 espresso shots in a coffee base) without getting caffeine jitters. Of course, it helps if you're so anemic you're about to keel over. :-) Your energy levels will come back up after you go gluten-free and your body isn't fighting itself.

[lob6796]

I'm assuming you mean you are going to the Grand Canyon? You can try "In and Out" a burger joint that has a dedicated fryer and they specialize in "protein style" burgers served wrapped in lettuce leaves. "La Tovar", "Bright Angel", and "Rod's Steakhouse"can accommodate gluten free (call ahead). There are alot of chain restaurants that do gluten free menus as well like PF Changs (which is out that way). Outback steakhouse, Bugaboo Creek also do gluten free menus but I am not sure if they have those out that way.

Alot of foods are naturally gluten free as well, just check the ingredients list. A few fast food joints do gluten free, you can check out their menus online.

And don't despair, there are great pastas, pizzas, and breads out there that are gluten free. Whole Foods/Wild Oats will become your best friend, since they have such a large array of gluten free foods it is overwhelming. It seems awful at first, but once you learn what to substitute with what, it isn't so daunting.

[Lisa Joy]

Yes, we are going to the Grand Canyon and that and any other travels I must take this summer for business are making me very anxious. What to eat when everyone else is being served one or two choices at a conference.

It is encouraging to know that I can find gluten free in some places.

How to tell what is gluten free and what isn't. We do have an Outback and In-N-Out here in town, so that's positive. We have a few PF Changs around here too.

I have never been a "plain" eater. I like sauces, etc. And, I am thinking I'd better get used to plain-at least out.

I'm looking at a Breadman Bread Machine with a gluten free cycle. Anyone have any experience with this one.