New Here...need Advice!

[Sunshine79]

Hi, I am very new to this! I just joined this forum and I have been reluctant to post anything until now. I have always had some of these

[sj8]

The diet takes time. I've been on the diet for 10 years this October. I went through a similar battle finally I found the right doctor at the University of Chicago.

The diet isn

[milkmommy]

I'm in the same situation. I don't have any advice but wanted to offer you support. I feel the same as you do and will post if I figure anything out.

The people on here are so supportive, so post your questions and feel safe to vent!!

A few things I have learned from here are

1) cross contamination is a huge issue and should be the first thing considered

2) give your body time to heal, some people feel better in a matter days, others months, others it takes a year or two

3) figure out if you have Other food intolerances, (corn, dairy, eggs, msg, aspartame, cane sugar, food coloring, etc)

4) advocate for yourself and don't worry what the dr thinks of you

5) ibs is nOt a real diagnoses but what the dr tells you when they can't figure out what's wrong

[kwylee]

You poor sweetie! Sorry your doctor left you with more questions than answers. You're not alone.

I'm only on this forum for the past year or so, but I don't know what I would have done in the first months without the wealth of knowledge, experiences and support I got from here, searching, reading, posting. My advice would be to keep coming back. Search, read, post, and you'll figure it all out one thing at a time.

[cahill]

Hi, I am very new to this! I just joined this forum and I have been reluctant to post anything until now. I have always had some of these “symptoms” I guess but I was diagnosed with IBS after having my gall bladder removed in 2001. I am a very active person with three growing, hyper boys! I recently had a lot of stomach pain and got sent to the ER for a workup because the doctor thought it may be appendicitis. It wasn’t. I got sent to gynecology for ovarian cysts….it wasn’t that either. After the CT, transvaginal ultrasound, exploratory laparotomy, upper endoscopy , colonoscopy and lab work…I found out that I have Celiac Disease.  When I asked the doctor (over the phone) what I needed to do now after finding the Celiac he simply said go on the diet and come back in two months. I thought wow really? This is crazy. I feel horrible. I need blood tests for vitamin deficiency and nausea medicine and….he said that I didn’t need any of that…

As I said before I am a very active person. I went from going to the gym everyday sometimes twice a day and then coming home, cooking, cleaning, doing yard work and taking care of my children to being so tired I do not want to move. This is very frustrating to me. So, I wanted to list my symptoms here and see if anyone could help me along…

Nausea

Diarrhea

Stomach pain

Gas, bloating, distention

Muscle soreness and cramps (this really bothers me)

Bruising (I have always bruised easy)

Exhaustion (my main complaint)

Dizziness (occasional)

SOB (occasional)

Lack of appetite

Weight loss (I weighed 125 when this started a month or so ago and now I weigh 117)

I cry every day.

My hands and feet seem to fall asleep more easily???

I am 32 years old. I have been diagnosed with IBS and Barrett’s esophagus so I go to the gastro doc regularly (every two years). I am on the gluten free diet, although I don’t have much of an appetite and don’t eat properly and I take a multivitamin every day.

Thanks in advance to anyone who can give me any advice on what to do….

Summer

how long have you been gluten free??

Is your multivitamin gluten free?

Sticking with whole foods at first is a good idea then later adding processed food slowly ( to make sure you can tolerate them)

at the VERY minimum you need to have your vitamin D and B checked along with checking to see if your anemic.

If your doc wont do it find a doc that will.

Having your thyroid checked is also a good idea.

[Sunshine79]

First of all, thanks for the advice and the support!

I have been gluten free for only two weeks now. It

[Takala]

You said you've been previously "diagnosed" with "IBS" and Barrett's esophagus.... you've been sick for years, got slowly malnourished, and now you're finally noticing.

my 2 year old is a bigger factor than the other two....

You will have to do two things 1) stick to the gluten free diet very strictly and 2) avoid cross contamination, which means you are going to have to really either purge and segregate your porous kitchen items like plastics, teflon, wood, cast iron, etc and food from the general family's, or ban gluten from your own kitchen.

Example: You've always wanted that new wooden cutting board... Here's your chance. And each new thing gets the nice new magic marker "gluten-free" written on it.

While they (older family) might be resistant to this, you do have to do what you need to do to protect your own health. This means you may want to switch the Chief Contaminant Vector, aka the toddler, over to eating gluten free at home because it's easier to get them used to it when they are smallish. As for the Family Dinners, they are relatively easy to switch over to gluten free status. (hint: rice pasta, potatoes, beans, corn tortillas... hello alternative starches, if you eat them) The breakfast cereals can be switched over to gluten free, also, this is especially easy now as there are more options. My husband voluntarily went gluten free at home after I got wiped out several times by accidental cross contamination, we have gluten free foods at home that I don't necessarily eat, but that he likes. Now the things like butter, mayo, peanut butter, etc, are all safe without my having to worry too much about what got dipped into it last. We did have the ketchup crisis recently where a supposedly organic, special gluten free brand wasn't, but that was resolved by getting a bottle of Heinz, the regular stuff, which turns out to be more reliable than the flakey brand he didn't know to avoid at the store. Many people complain about the 1. Time involved, and 2) the Cost of cooking from scratch and eating gluten free. It's still cheaper than being sick, and really, what are you doing with your time anyway, that everything else is more important than actually preparing your own food so you can actually eat it to function ? Yeah, I fully agree the label reading will tend to drive one bonkers, but that is the food manufacturers with the actual problem, not us, they ought to just quit putting mystery ingredients in so many items.

If you have pets that drool, slobber, or lick you and live indoors, you may want to switch them over to a gluten free food, also. I have a huge indoor/outdoor dog with a bona fide wheat allergy, and I'm more afraid of his getting cross contaminated by accidentally getting into cat food than I am of my own reactions, because at least I don't puke all over the rug. We switched all the pets over. The cats seem to look a lot better off of wheat, especially the oldest ones. We also have one horse with a vet diagnosed rye/barley/soy allergy which aggravates his reaction to insect bites in summer, and had to ban certain types of hay mixes, grain mixes with barley, and horse supplements off the place. It was easier than always having to think "what is in this bale of hay and do I have to switch his pasture mate again?" Just getting the dog from the pound, and having the vet quickly figure it out, turned out to helping me become much less at risk of getting cross contaminated, and the horse. The dogs eating regular dog food with all that wheat family junk in it were drinking out of the horse's water tanks and buckets, and that was in turn, cross contaminating him that way... so were the cats... it's always something. I had never thought of this before and I thought I had been on top of everything.

Chances are the doctor is going to be nearly clueless on this, and at most will send you to a dietician who will be almost equally clueless. I got a note last year from my PCP (who seems to at least humor my 8 years of avoiding gluten) that said I should take a "nutritional consult w/ a dietician" for a "low fat diet" to "control cholesterol." (this was in response to all my hypo- thyroid symptoms, just like w/ celiac, I can't throw a positive blood test, and don't pay attention to family history, so they go off on a tangent) I just laughed it off as they push this routine on anybody over age 50. These low fat diets would have me eating just a freaking bowl of cereal and milk every day for breakfast, which makes me sicker than a dog, and a turkey sandwich for lunch (MORE BREAD, yuck) and broiled fish and vegetables for dinner.... we already eat salad and meat/chicken/fish for dinner, I'm already eating more fruits, nuts, and vegetables than anybody on a supposed low fat diet, and I'm carb intolerant, where am I supposed to go with this ? Eat more rice cakes ?!

[cahill]

Why does everyone check for other allergies? Is this common if you have celiac disease?

What puzzles me is how this is so sudden. I have no clue where this came from and why I am suddenly having ALL of these symptoms.

Thanks again!

It is common for someone who is celiac or gluten intolerant to have other intolerances or allergys.Some of the more common intolerances are to dairy,soy,corn,nightshades(potatoes,tomatoes ,peppers ,eggplant ect..) .Every one is different.

Sometimes as the gut heals the secondary intolerances resolve .

For some ,if not most of us, something triggered the onset of symptoms. The predisposition( the genetics) is there but there is a suggestion that a trigger is needed to set things in motion . A birth of a child , course of antibiotics,quitting smoking,a traumatic injury are some of the more commonly mentioned triggers

[Sunshine79]

Thanks for all of the VERY helpful advice! I think I am going to calm down and try to be patient with this

[cahill]

Thanks for all of the VERY helpful advice! I think I am going to calm down and try to be patient with this….

I finally threw a fit and got my doctor to draw my blood! BUT…everything looks ok except my glucose which was 59. I had a cup of yogurt and a delicious gluten free peanut butter cookie for breakfast at 8 and had my blood drawn at 9:45. Should my blood glucose really be that low?

What blood tests did your doctor do???

You could have either the lab or the doctors office send the reports to you.

[Poppi]

I also have a 2 year old (as well as 5, 15, 17 and 20 year olds) and she is absolutely the number 1 cause of cross contamination and sickness. Because of her (and to a lesser extent the 5 year old) we have gone 100% gluten free in the top of the house. We own an up/down duplex with a connecting interior door which we have removed to make it more like a single dwelling. The three oldest kids live downstairs and they are allowed to cook and eat gluten down there as long as they never bring it upstairs and they wash their hands before coming up. They have very little in the way of gluten food down there (I don't even like to put loaves of bread in my shopping cart so they have to go to the store for it themselves which they usually can't be bothered to do) but they all like their noodle bowls and regular soy sauce.

My 2 year old was touching everything with gluteny hands, wanting kisses and cuddles and touching my food. It just wasn't working for me any more. My 5 year old is better but even he would reach into the marshmallow bag after touching his gluten graham crackers. I can finally relax in my own home now that we are totally gluten free. The only gluten I come into contact with on a daily basis is the chicken feed and I am religious about scrubbing my hands after any contact with the birds or their food.

Give some consideration to at least doing a trial of a completely gluten free home.

[Sunshine79]

What blood tests did your doctor do???

You could have either the lab or the doctors office send the reports to you.

I do have the lab reports! I seen them before the doctor did and when I asked the nurse why the doctor said my labs were alright when my glucose was clearly low she said she didn't know and that if I didn't get to feeling any better to call them back....and I am thinking, call you back for what?

[Sunshine79]

I also have a 2 year old (as well as 5, 15, 17 and 20 year olds) and she is absolutely the number 1 cause of cross contamination and sickness. Because of her (and to a lesser extent the 5 year old) we have gone 100% gluten free in the top of the house. We own an up/down duplex with a connecting interior door which we have removed to make it more like a single dwelling. The three oldest kids live downstairs and they are allowed to cook and eat gluten down there as long as they never bring it upstairs and they wash their hands before coming up. They have very little in the way of gluten food down there (I don't even like to put loaves of bread in my shopping cart so they have to go to the store for it themselves which they usually can't be bothered to do) but they all like their noodle bowls and regular soy sauce.

My 2 year old was touching everything with gluteny hands, wanting kisses and cuddles and touching my food. It just wasn't working for me any more. My 5 year old is better but even he would reach into the marshmallow bag after touching his gluten graham crackers. I can finally relax in my own home now that we are totally gluten free. The only gluten I come into contact with on a daily basis is the chicken feed and I am religious about scrubbing my hands after any contact with the birds or their food.

Give some consideration to at least doing a trial of a completely gluten free home.

Thanks,I think I will talk to my husband about this but my kids are very picky eaters and isn't it pretty expensive that way?

[Sunshine79]

What blood tests did your doctor do???

You could have either the lab or the doctors office send the reports to you.

I'm sorry I forgot to add...he did:

CBC with differential

CMP

TSH

Lipase

[cahill]

I'm sorry I forgot to add...he did:

CBC with differential

CMP

TSH

Lipase

What about vitamin D,B12,magnesium ,potassium, iron levels??

[Sunshine79]

What about vitamin D,B12,magnesium ,potassium, iron levels??

Do those test not include all of that? I thought all of that would show up on the CMP and CBC? I am so confused!

[Poppi]

Thanks,I think I will talk to my husband about this but my kids are very picky eaters and isn't it pretty expensive that way?

It's a little bit more expensive but it's worth it. We have made changes. Those cheap fillers like bread, pasta and pancakes rarely make it to our table anymore because the gluten free alternatives are very expensive.

They miss their Campbell's Chicken noodle but I make them a similar soup with gluten-free chicken bouillon and broken up corn spaghetti, we also buy Campbell's chicken and rice.

I love to bake and have done a ton of experimenting with gluten-free flour mixes. My favourite gluten-free flour mix sells for $14 for 1.36 kg (I'm in Canada so we pay more for everything) but I've been able to make an almost identical mix at home for $4 a kg. I keep the freezer stocked up with muffins, cookies, brownies and banana bread. We eat a lot of fruit, potatoes, rice and meat.

A typical week for us for dinner would look something like this:

~ Tacos (corn shells are gluten-free, I make my own taco seasoning and the toppings are just lettuce, tomatoes, salsa, cheese, sour cream etc)

~ Turkey chili with cornbread (I like Bob's red mill cornbread mix but I'll make it from scratch too)

~ Breakfast casserole, fruit and pancakes (I use Pamela's, the little kids get 2 pancakes each because they don't like eggs and everyone else has 1)

~ Baked potatoes topped with Campbell's Homestyle Chili and big salads

~ Some sort of chicken dish with rice and veggies

~ Some sort of soup or stew in the crock pot

~ Grilled salmon, rice and veggies

It's just normal food. The little kids can be picky so I cook a pot of steel cut oats (Bob's Red Mill gluten-free) every other day and keep it in the fridge. If they don't like dinner they are free to have a bowl of oats or a hot dog and some fruit. Lily likes her hot dog naked and Logan likes his on a bun so I buy the Udi's buns. They are expensive but we buy a bag a week or so.

On the last Wednesday of every month a local store has 20% off everything and I go in and buy a whole month's worth of gluten free oats, steel cut oats, flours, crackers, graham crackers, graham cracker crumbs, panko crumbs, granola etc.

I also watch the sales obsessively as we don't get coupons in Canada. If something I know is gluten free goes on sale I stock up. The other day I bought a case of Bush's baked beans, a case of campbell's homestyle chili, 6 boxes of Honey Nut Rice chex, 14 450g packages of corn spaghetti and 8 boxes of Chapman's gluten free cookie's and cream ice cream. All of them were at least 50% off and now they are happily waiting in my pantry to be eaten.

It takes a lot of planning and compromise. Before my diagnosis I baked and/or bought up to 10 loaves of bread/buns a week. Now we make do with 1 loaf of bread and 1 package of hot dog buns. Pancakes used to be a biweekly meal and now they are a treat. The kids used to eat grilled cheese or chicken noodle soup for lunch every day and now they have hot dogs, fruit, cheese, banana bread, muffins or chicken and rice soup. We all adjusted because the health of one of our loved ones is at stake. It's what families do.

[Sunshine79]

It's a little bit more expensive but it's worth it. We have made changes. Those cheap fillers like bread, pasta and pancakes rarely make it to our table anymore because the gluten free alternatives are very expensive.

They miss their Campbell's Chicken noodle but I make them a similar soup with gluten-free chicken bouillon and broken up corn spaghetti, we also buy Campbell's chicken and rice.

I love to bake and have done a ton of experimenting with gluten-free flour mixes. My favourite gluten-free flour mix sells for $14 for 1.36 kg (I'm in Canada so we pay more for everything) but I've been able to make an almost identical mix at home for $4 a kg. I keep the freezer stocked up with muffins, cookies, brownies and banana bread. We eat a lot of fruit, potatoes, rice and meat.

A typical week for us for dinner would look something like this:

~ Tacos (corn shells are gluten-free, I make my own taco seasoning and the toppings are just lettuce, tomatoes, salsa, cheese, sour cream etc)

~ Turkey chili with cornbread (I like Bob's red mill cornbread mix but I'll make it from scratch too)

~ Breakfast casserole, fruit and pancakes (I use Pamela's, the little kids get 2 pancakes each because they don't like eggs and everyone else has 1)

~ Baked potatoes topped with Campbell's Homestyle Chili and big salads

~ Some sort of chicken dish with rice and veggies

~ Some sort of soup or stew in the crock pot

~ Grilled salmon, rice and veggies

It's just normal food. The little kids can be picky so I cook a pot of steel cut oats (Bob's Red Mill gluten-free) every other day and keep it in the fridge. If they don't like dinner they are free to have a bowl of oats or a hot dog and some fruit. Lily likes her hot dog naked and Logan likes his on a bun so I buy the Udi's buns. They are expensive but we buy a bag a week or so.

On the last Wednesday of every month a local store has 20% off everything and I go in and buy a whole month's worth of gluten free oats, steel cut oats, flours, crackers, graham crackers, graham cracker crumbs, panko crumbs, granola etc.

I also watch the sales obsessively as we don't get coupons in Canada. If something I know is gluten free goes on sale I stock up. The other day I bought a case of Bush's baked beans, a case of campbell's homestyle chili, 6 boxes of Honey Nut Rice chex, 14 450g packages of corn spaghetti and 8 boxes of Chapman's gluten free cookie's and cream ice cream. All of them were at least 50% off and now they are happily waiting in my pantry to be eaten.

It takes a lot of planning and compromise. Before my diagnosis I baked and/or bought up to 10 loaves of bread/buns a week. Now we make do with 1 loaf of bread and 1 package of hot dog buns. Pancakes used to be a biweekly meal and now they are a treat. The kids used to eat grilled cheese or chicken noodle soup for lunch every day and now they have hot dogs, fruit, cheese, banana bread, muffins or chicken and rice soup. We all adjusted because the health of one of our loved ones is at stake. It's what families do.

That sounds awesome! That menu made my mouth water, haha! I eat everything that is not processed and I haven't bought anything that's actually gluten free except some ranch dressing and peanut butter. I eat the natural gluten free items, like fruit and meat and vegies (it get's pretty routine and bland after a while)! What I would give to have a bowl of that chili and cornbread! ;)I think we could do it! I have to make sure everyone is alright with it of course (if I could find food disguised good enough the boys probably wouldn't even know it!) My 7 year olds name is Logan too!

I do a lot of research while I am here at work because I barely find the time once I am at home. Everyone on this board has been great! Thanks for all of your help!

[Poppi]

You can do it. If one of your children had a severe food intolerance and was being kept sick by the food in your home you would not hesitate to make the entire house gluten free for their safety. You deserve no less.

[Sunshine79]

You can do it. If one of your children had a severe food intolerance and was being kept sick by the food in your home you would not hesitate to make the entire house gluten free for their safety. You deserve no less.

That is exactely right; I would do it for them in a second without hesitation!! I think I put myself at the bottom of the list way to often! Thanks so much again for your help and support!

[cahill]

Do those test not include all of that? I thought all of that would show up on the CMP and CBC? I am so confused!

No they are not.They have to be ordered separately by your doctor.

When I have my testing done the show up separately on the lab results.

[Sunshine79]

Unfortunately my GI doctor is a joke. I do have an appointment next week to see my family doctor. I will ask him about all of those test! I am writing them down now! I am so disappointed in the healthcare system right now and embarrassed to be a part of it...

Thanks so much for all of your help!

[GlutenFreeManna]

They miss their Campbell's Chicken noodle but I make them a similar soup with gluten-free chicken bouillon and broken up corn spaghetti, we also buy Campbell's chicken and rice.

Just wanted to point out for those that are in the US, Campbell's Chicken and Rice is NOT gluten-free here. Poppi is in Canada so she has more options for Campbell's I believe. They don't make any gluten-free soups for the US. Here's the US list of Campbell's products: Open Original Shared Link

The rest of your menu sounds great though Poppi! It's very similar to how we eat. Normal food that just happens to be gluten-free.

[Poppi]

Just wanted to point out for those that are in the US, Campbell's Chicken and Rice is NOT gluten-free here. Poppi is in Canada so she has more options for Campbell's I believe. They don't make any gluten-free soups for the US. Here's the US list of Campbell's products: Open Original Shared Link

The rest of your menu sounds great though Poppi! It's very similar to how we eat. Normal food that just happens to be gluten-free.

Oh wow, I had no idea there was such a difference. Here is the list of Canadian Campbell's gluten-free products. Open Original Shared Link

That is a great example of why it's important to find information on your country or region. I have used US lists for places like Dairy Queen before when I couldn't load the Canadian list on my phone, now I see why that is a very bad idea.

[GlutenFreeManna]

Oh wow, I had no idea there was such a difference. Here is the list of Canadian Campbell's gluten-free products. Open Original Shared Link

That is a great example of why it's important to find information on your country or region. I have used US lists for places like Dairy Queen before when I couldn't load the Canadian list on my phone, now I see why that is a very bad idea.

Yep, there's a big difference. I don't understand WHY they need to put gluten in some foods made in US but not Canada and vice versa. I see that your list has tomato soup. If I'm ever in Canada I might have to buy some tomato soup because I miss Campbell's tomato soup. Last summer I made my own tomato soup with roasted tomatoes fresh from my garden and it was wonderful! But I still miss Campbell's which was the soup I grew up on. I just console myself by thinking that it probably would taste bad to me now since I haven't eaten canned soup for almost a year (I had some Progresso back when I could do dairy and it was gross. I still have some Progresso soup in my huricane emergency box but my hubby will have to eat it).