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Newly Diagnosed

OliviaB

By OliviaB
in Coping with Celiac Disease

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squirmingitch Veteran
squirmingitch
Posted

Squimingitch

LOL

We could start a fan club....but Irish would probably be mortified. I'm thinkin' that we can honor her and Skylark and ...so many others on here whose names I cant recall, by asking questions, doing independent research, sharing our findings and experiences and most of all my being supportive of other newbies.

I'm almost 2 mos into this thing, about 2 weeks on this site. How 'bout you? :-)

Uhhhh...skooch over, your bowing is upstaging my scraping!

LOL!laugh.giflaugh.gif

Nana, I joined Nov. of 2011 & was gluten-free 10/11 or so I thought.smile.gif but the good people on here helped me out right from the beginning. I have learned MUCH. There is always more to learn though. Bits of wisdom here & there. I have dh (dermatitis herpitiformis; the skin manifestation of celiac) & I recently had a "meltdown?" of frustration. They jumped right in & gave me support & helped me to figure out the problem. I was essentially ODing (in a manner of speaking) on salicylates. Saved my sanity.

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JustNana Apprentice
JustNana
Posted

Olivia

The old Irish chick is right.

Right now, what are you most apprehensive about? Do you think going gluten-free is going to be too hard? Are you afraid you'll give up all the things you love and not feel better? Are you concerned your family and friends are going to think you're weird?

All this and much more?

Go ahead, let it out. We're unshockable and non-judgmental.

OliviaB Newbie
OliviaB
Posted
  • Author

All right, knock it off, you two sillies! :lol: (mortified, hell no! I was more mortified you thought I was a dude.)

But, this is Olivia's thread.

Olivia--what else do you need? Squirmy and Nana are here to do your bidding. :) ... see how nicely they are bowing?

LoL Thanks. At the moment I don't really know what else I need. I'm sure I will have plenty of more specific questions later.

squirmingitch Veteran
squirmingitch
Posted

Olivia, it's pretty overwhelming at first. I think everyone experiences it. I certainly did. You can't imagine giving up your favorite foods. For me it was biscuits --- I have always made my own. And there were a number of other things. And I did miss biscuits like crazy at first. Already I don't even think about them. And you wonder what in the world you will eat. IrishHeart has given you a stellar list to start!

JustNana Apprentice
JustNana
Posted

squirmingitch

I have Dermatitis Herpetiformis too. And also very recently diagnosed Hashimoto's. (Autoimmune hypothyroidism) With a growth! Oh yippee. A biopsy was negative but it bears watching. I was put on the standard low dose T4 only Levolyx. This may be a battle. My FT3 is low TSH is high, I'm tired itchy, crabby, my eyebrows are falling out, my hips are killing me, I am %#

OliviaB Newbie
OliviaB
Posted
  • Author

Olivia

The old Irish chick is right.

Right now, what are you most apprehensive about? Do you think going gluten-free is going to be too hard? Are you afraid you'll give up all the things you love and not feel better? Are you concerned your family and friends are going to think you're weird?

All this and much more?

Go ahead, let it out. We're unshockable and non-judgmental.

Right now, as weird as it sounds, I am most worried about having time for a gluten-free diet. While fruits and salads and such are quick and easy, I am eventually going to get tired of just fruits and salads. My husband and I don't have a lot of time to cook meals these days. We rely heavily on grabbing something to-go from a restaurant or (yes, I admit it) fast food. That doesn't seem to be an option now, at least not until I can really learn more about what I can and can't eat. I know I will feel better in the end. I have been gluten-free (mostly) for at least 4 days now (due to my clear-liquid diet prep and bland diet afterwards) and already feel like my elbows are itching a little less (it's probably in my head, lol). I'm hopeful the stomach cramps and such will lessen soon (even if it is in my head!).

I know my family and friends will be supportive. Most of my friends work in the medical field, so they all get it. Even though my family will be supportive, they will probably be less understanding mainly because of lack of knowledge (I can see a lot of "surely you can have one roll" in my future). My in-laws, on the other hand, will be a completely different story. They will probably think it is all in my head as a way to seek attention. I'm sure they will be cooking their regular hamburgers every Friday and act like they forgot every time I don't eat one.

JustNana Apprentice
JustNana
Posted

Olivia,

Oh my. I totally get it. You are not weird to say your big concern is time. There are fast food options. In and Out Burger is happy to serve you a cheeseburger protein style, wrapped in lettuce with all the fixin's. Their fries are SAFE!

Grab a chicken and bake it. Get a loaf of Udis bread. Make salads with protein. Make a sandwich. It will last days. Do a pot roast. Make a soup/stew on Sunday and eat on it. Boil some eggs. Make tuna salad too. Just hang in there. In a couple of weeks your carb craving will subside, I promise. I was a bread, pasta, cookie freak. Oh get some great cheese and ham and deli pastrami and turkey. Read the labels. Make potato salad. Make a ton of Ranch dressing and find something decadent to dip in it. Untl you get a handle on things, be nce to yourself. Jelly bellis are fine. Crunchmaster cracker with great cheese is lunch.

Please let us k ow how you are doing...tomorrow and especially Monday. You are I. Our thoughts!!

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IrishHeart Veteran
IrishHeart
Posted

Right now, as weird as it sounds, I am most worried about having time for a gluten-free diet.

I'm hopeful the stomach cramps and such will lessen soon (even if it is in my head!).

. Even though my family will be supportive, they will probably be less understanding mainly because of lack of knowledge (I can see a lot of "surely you can have one roll" in my future). My in-laws, on the other hand, will be a completely different story. They will probably think it is all in my head as a way to seek attention. I'm sure they will be cooking their regular hamburgers every Friday and act like they forgot every time I don't eat one.

(1) Once you get into a pattern, this is second nature. I promise you. I spend no more time prepping or grocery shopping or baking than I did before. Once you know what you can eat and the SUBSTITUTIONS you can make, you'll be fine! :)

(2) Symptoms are "not in your head". You have a serious AI disease and those symptoms are the indicators of it. They will lessen, in time.

(3) I wrote an explanation for my family and friends. You will do the same. Then, you will give your in-laws a list of safe/unsafe foods and explain that eating ANY gluten will make you very sick and could potentially cause death if you do not stick to the gluten free diet. If they do not honor your need for a safe diet, then...well, you'll cross that bridge when you get to it. But, your in-laws need to be educated on the seriousness of this disease. It is nothing to scoff at.

You CAN eat hamburgers, you just need to bring your own roll. :) Get some CHEBE bread mix. You can make awesome rolls. Scharr makes good rolls as does UDI.

My friends took time to read about celiac and gluten and they have been very helpful and willing to learn. Recently, two of them made me dinner in their homes using some of my cookware. I gave one a flexible cutting board to use. One of them purchased her own flexible cutting board and separate utensils--just for me. How sweet is that?? :)

Do not worry about what others think or how they will react. Your primary concern right now---is YOU!!

Best wishes. PM me if I can be of more help. If I do not know the answer, I can point you to someone who will.

IH

OliviaB Newbie
OliviaB
Posted
  • Author

(1) Once you get into a pattern, this is second nature. I promise you. I spend no more time prepping or grocery shopping or baking than I did before. Once you know what you can eat and the SUBSTITUTIONS you can make, you'll be fine! :)

(2) Symptoms are "not in your head". You have a serious AI disease and those symptoms are the indicators of it. They will lessen, in time.

(3) I wrote an explanation for my family and friends. You will do the same. Then, you will give your in-laws a list of safe/unsafe foods and explain that eating ANY gluten will make you very sick and could potentially cause death if you do not stick to the gluten free diet. If they do not honor your need for a safe diet, then...well, you'll cross that bridge when you get to it. But, your in-laws need to be educated on the seriousness of this disease. It is nothing to scoff at.

You CAN eat hamburgers, you just need to bring your own roll. :) Get some CHEBE bread mix. You can make awesome rolls. Scharr makes good rolls as does UDI.

My friends took time to read about celiac and gluten and they have been very helpful and willing to learn. Recently, two of them made me dinner in their homes using some of my cookware. I gave one a flexible cutting board to use. One of them purchased her own flexible cutting board and separate utensils--just for me. How sweet is that?? :)

Do not worry about what others think or how they will react. Your primary concern right now---is YOU!!

Best wishes. PM me if I can be of more help. If I do not know the answer, I can point you to someone who will.

IH

Just to clarify, I meant the feeling better might be "in my head" at first. As in, I might be thinking I'm feeling a little better just because I am trying so hard. I definitely know the symptoms aren't in my head!

I am going to make my first Celiac grocery shopping trip today. I am excited and nervous at the same time!

IrishHeart Veteran
IrishHeart
Posted

Just to clarify, I meant the feeling better might be "in my head" at first. As in, I might be thinking I'm feeling a little better just because I am trying so hard. I definitely know the symptoms aren't in my head!

I am going to make my first Celiac grocery shopping trip today. I am excited and nervous at the same time!

:lol: I understand what you meant now.

Okay, well, good luck, hon!

Are you near a Whole Foods, or a Wegman's by any chance? they have tons of gluten-free foods. (Also, google gluten-free bakeries in your area.)

All the food you have known throughout your life is still the same: fruits, meats, vegs, nuts, rice, eggs, dairy, etc. :) Plain, whole foods are usually gluten-free.

The only difference now is finding subs for the gluten grains: a good pasta and a palatable bread, if you eat those regularly.

Labels will clearly say "contains wheat" if it does. The tricky part is the other gluten ingredients: rye, barley, malt, & oats that are not certified gluten-free. But they are not required to list those as allergens.

Think of it as a new adventure!

  • 3 weeks later...
Mnicole1981 Enthusiast
Mnicole1981
Posted

I keep reading that once you are diagnosed, you should stay away from all dairy. I have been lactose intolerant for years already and have always drank Lactaid. Can I still eat it with my cereal?

Also, is spinach not allowed?

IrishHeart Veteran
IrishHeart
Posted

I keep reading that once you are diagnosed, you should stay away from all dairy. I have been lactose intolerant for years already and have always drank Lactaid. Can I still eat it with my cereal?

Also, is spinach not allowed?

It is possible your lactose intolerance is a result of the Celiac. The villi in your gut are blunted and lactase, which is the enzyme needed to digest lactose, is produced in the tips of the villi.

When the villi heal, most celiacs can tolerate lactose once more.

Some cannot.

If you drink Lactaid and suffer no bloating, diaarhea, cramping, etc. then you should be all right. I gave it up for 10 months because my doctor felt I would speed healing and suffer less discomfort. I tolerate small portions of dairy just fine now.

What's wrong with spinach, honey? It's not a gluten grain.

It's a great vegetable, full of iron and folic acid! Eat up! :)

Read the safe and unsafe foods lists in the FAQ section at the top of every Forum Section or read this thread for similar info:

It is the same thing I wrote earlier in this thread, but with updates.

Mnicole1981 Enthusiast
Mnicole1981
Posted

It is possible your lactose intolerance is a result of the Celiac. The villi in your gut are blunted and lactase, which is the enzyme needed to digest lactose, is produced in the tips of the villi.

When the villi heal, most celiacs can tolerate lactose once more.

Some cannot.

If you drink Lactaid and suffer no bloating, diaarhea, cramping, etc. then you should be all right. I gave it up for 10 months because my doctor felt I would speed healing and suffer less discomfort. I tolerate small portions of dairy just fine now.

What's wrong with spinach, honey? It's not a gluten grain.

It's a great vegetable, full of iron and folic acid! Eat up! :)

Read the safe and unsafe foods lists in the FAQ section at the top of every Forum Section or read this thread for similar info:

It is the same thing I wrote earlier in this thread, but with updates.

I figured nothing was wrong with spinach. I just felt bad last night and couldn't figure out why. I had some some Ian's Chicken Bites and a spinach salad. Couldn't figure out why. I lost another two pounds. So now I am 162. Still think losing 10 lbs in a week is scary.

Anybody else lose that much so fast?

IrishHeart Veteran
IrishHeart
Posted

I figured nothing was wrong with spinach. I just felt bad last night and couldn't figure out why. I had some some Ian's Chicken Bites and a spinach salad. Couldn't figure out why. I lost another two pounds. So now I am 162. Still think losing 10 lbs in a week is scary.

Anybody else lose that much so fast?

That is a lot of weight to lose in one week, but I know nothing about your health or your circumstances.

You're sure they were Ian's gluten-free chicken bites, right? Doesn't that company make ones that are not gluten-free?? (or I am thinking of some other company maybe)

Are you eating enough throughout the day?

Without taking the post off topic too much, can you tell me how long you have been gluten-free?

Mnicole1981 Enthusiast
Mnicole1981
Posted

I have not been diagnosed yet, but back at the end of February, I started to get really bad indigestion. It also happened to coincide with my period. I thought it was just my acid reflux, so I had my doc call in a Nexium prescription. After a few days, I felt fine. When it happened again at the end of the month, again around my period, I thought it might be IBS. Well, it has not stopped. I was constipated, had indigestion, constant burning in my upper abdomen, abdominal discomfort, insomnia, fatigue, hiccups, anxiety/paranoia. My doc said I was lactose intolerant. I knew that. So I stopped all dairy. Nothing changed. After reading up on celiac disease, I realized that I

had a lot of the symptoms. Last year, I was told I was anemic. Then came the rash sometime during last year, and now whatever else is going on.

IrishHeart Veteran
IrishHeart
Posted

I have not been diagnosed yet. After reading up on celiac disease, I realized that I had a lot of the symptoms.

If you are looking for a celiac diagnosis and have not been tested, you should REMAIN on a gluten filled diet, hon. You cannot get accurate test results if you remove gluten.

I think I remember your other post--aren't you having a biopsy this week??

Your symptoms sure sound like gluten intolerance to me.

mark5767 Newbie
mark5767
Posted
Well, it has not stopped. I was constipated, had indigestion, constant burning in my upper abdomen, abdominal discomfort, insomnia, fatigue, hiccups, anxiety/paranoia.

This reminds me of some of the symptoms I experienced prior to being diagnosed celiac. An occasional aching in my right side upper abdomen became a constant burning that never completely went away. This was accompanied by a lot of burping when the pain was at its worst.

After going gluten free 45 days ago (& dairy free 14 days) the constant pain is getting better, with some frustrating reoccurences from time to time.

After a brief period of doubting upon being informed I could not longer eat normal bread, etc etc, I have arrived at a place of gratitude if that's all I need to do to keep the pain at bay. Abdominal pain is no fun at all!

beachbirdie Contributor
beachbirdie
Posted

I figured nothing was wrong with spinach. I just felt bad last night and couldn't figure out why. I had some some Ian's Chicken Bites and a spinach salad. Couldn't figure out why. I lost another two pounds. So now I am 162. Still think losing 10 lbs in a week is scary.

Anybody else lose that much so fast?

Yes, I have lost that much that fast. It was all water. I have some serious fluid retention when I eat gluten, and after 3 or 4 days gluten free, it all washes out.

Still waiting to decide if I want to go through any more testing, so still glutening. And still swollen. It's sure uncomfortable {sigh}.

IrishHeart Veteran
IrishHeart
Posted

Sorry you guys are so uncomfortable still on gluten. :(

I know ---it just plain sucks.

I hope you both get answers soon so you can stop the madness.

To me, if you are having such distress on gluten, that speaks volumes. Celiac or not. (I am one of those people who view wheat gluten as poison. My personal kryptonite. It tried to kill me. <_< )

Go gluten-free and don't look back, IMHO.

IrishHeart Veteran
IrishHeart
Posted

Still waiting to decide if I want to go through any more testing, so still glutening. And still swollen. It's sure uncomfortable {sigh}.

Looking at your sig line, Hashi's, D Def and diverticulitis, PLUS DQ2 genes? That would be enough for me. (IMHO, of course!)

Mnicole1981 Enthusiast
Mnicole1981
Posted

I am going to keep up with the gluten. I haven't really been eating at all which is probably why I have lost so much weight. And it is not that I don't have an appetite, just afraid what I eat will make me sick. Last Tuesday, I had baked chicken, brown rice, and green beans. I sprayed the chicken with cooking spray and felt awful that night. Went to the ER the next morning. Then had oatmeal later that night and felt horrible. My belly was on fire. And I was sweating something awful that night. Did anybody else have night sweats?

IrishHeart Veteran
IrishHeart
Posted

yes. I had night sweats, I had EVERYTHING. I lived in hell.

I am sure you are afraid to eat--- because it IS making you sick!

I was in the same boat. Lost 90 lbs. I was very ill with celiac disease.

That is why you are losing weight sweetie.

Gluten makes you sick.

I hope you get through the week! Hang in there.

Mnicole1981 Enthusiast
Mnicole1981
Posted

yes. I had night sweats, I had EVERYTHING. I lived in hell.

I am sure you are afraid to eat--- because it IS making you sick!

I was in the same boat. Lost 90 lbs. I was very ill with celiac disease.

That is why you are losing weight sweetie.

Gluten makes you sick.

I hope you get through the week! Hang in there.

Thank you! I am attempting to go back to work tomorrow and up until my EGD and colonoscopy. It just seems like people don't understand. Glad I found this board.

IrishHeart Veteran
IrishHeart
Posted

Thank you! I am attempting to go back to work tomorrow and up until my EGD and colonoscopy. It just seems like people don't understand. Glad I found this board.

we understand! (hugs) kiddo...hang tough!

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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