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Need Some Buckin' Up :-(

conniebky

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conniebky Collaborator
conniebky
Posted

Hi everyone. I have been doing SO GOOD on gluten-free except for coffee. Yesterday I wnt to the mark and ground my own coffee beans, figured that would eliminate an CC. So this morning I drank two full cups at home and had no immediate reaction. (I haven't been able to drink coffee without a reaction).

I haven't eaten anything today and last night I had Rice Chex cereal for supper. Then I was just walking outside and got all dizzy and freaky feeling and stomach cramps. Saturday we had a big family party and I drank bourbon and felt a little "different" yesterday, but not as exdtreme as the reaction I just now had.

Any ideas guys? I'm kinda shook up. :unsure:

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Roda Rising Star
Roda
Posted

Some people have reported having problems with chex cereals while others feel fine.

dilettantesteph Collaborator
dilettantesteph
Posted

I've been noticing your posts for awhile and I have been thinking that you might be "one of us". A celiac that is more sensitive to trace gluten than others. I know that you are still new to the diagnosis and it may still be too early to tell. I can't eat rice chex cereal either. Have you tried it before? What I do is only add one new item a week. That way I can tell what is bothering me. If you added new coffee and new cereal in the same day, it makes it hard to figure out what is bothering you.

Stephanie

conniebky Collaborator
conniebky
Posted
  • Author

I've been noticing your posts for awhile and I have been thinking that you might be "one of us". A celiac that is more sensitive to trace gluten than others. I know that you are still new to the diagnosis and it may still be too early to tell. I can't eat rice chex cereal either. Have you tried it before? What I do is only add one new item a week. That way I can tell what is bothering me. If you added new coffee and new cereal in the same day, it makes it hard to figure out what is bothering you.

Stephanie

Hi Stephanie -

Thank you so much for the insight. No, I've never had Rice Chex before and I ate a HUGE bowl before I went to bed. Then I got up and drank my new coffee, but the reaction didn't happen until about 1-2 hours later, longer if we consider the Chex. Boy, I'll tell ya, those reactions just take me DOWN, like Ali or something, they knock me OUT and I don't like it one bit. Maybe I should go and have the blood test?

dilettantesteph Collaborator
dilettantesteph
Posted

Do you mean the blood test for celiac disease? It tests for antibodies to gluten in the blood. To have these in measurable levels you need to be eating a lot of gluten. People need to have this test done before going gluten free.

conniebky Collaborator
conniebky
Posted
  • Author

Do you mean the blood test for celiac disease? It tests for antibodies to gluten in the blood. To have these in measurable levels you need to be eating a lot of gluten. People need to have this test done before going gluten free.

I'm sitting here at work with tears in my eyes. I'm so upset this has happened. I feel just like I used to before going gluten free. Which, on the one hand lets me know I am certainly on the right track, and if all this reaction is due to just eating a bowl of cereal, that's an easy fix. I don't know why I'm falling apart about this, but I am. I wish you all worked with me so you all could be right here instead of out in 'net land :(

I dont' know why I'm so upset. Sorry for getting all emotional.

jerseyangel Proficient
jerseyangel
Posted

Aw Connie--I feel ya :( I get emotional and anxious when glutened--it's all connected. I would suspect the cereal, too. I think there's a cross contamination issue with it--some can tolerate it just fine but as Steph said, those of us who are super sensitive can't do most "gluten-free" processed foods--at least the mainstream brands.

I went completely back to whole, naturally gluten-free foods like meat, veggies, fruit, potatoes, rice, etc--anything you know you are ok with--and only add one new thing at a time. Try keeping a simple food log to help you track your symptoms and what is causing what.

It can take some time, but it can be done and is worth it :)

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GottaSki Mentor
GottaSki
Posted

Hang in there...wish I could tell you that the reactions will improve. Over the past year I have become beyond hypersensitive to Gluten. Micro amounts cause me to bloat within the hour...which continues for hours after and I become achy and at times very emotional. I am fortunate that each time I have felt almost all better the next morning.

We now call gluten - Mom's kryptonite because it brings me down the way superman drops at the sight of the green stuff!

I'd imagine every Sillyak has had many frustrating, tear-filled moments (I know I have) - you will buck up, but give yourself time when to be a bit low when facing the frustration!

conniebky Collaborator
conniebky
Posted
  • Author

Is whole grain brown rice gluten free? I have this quaker caramel corn rice snacks and it says whole grain brown rice.

O.N. Rookie
O.N.
Posted

I gave up coffee for some time before I could have it in small quantity. Some people have their guts very damaged so they become very sensitive. Coffee may irritate your gut, as spices or vinegar do. Try not to drink coffee for a while, or take it with lactose-free milk if you can (just one small cup). :)

jerseyangel Proficient
jerseyangel
Posted

Is whole grain brown rice gluten free? I have this quaker caramel corn rice snacks and it says whole grain brown rice.

Brown rice is gluten-free, but I would stay away from Quaker because of cross contamination issues. Lundberg makes their rice cakes on dedicated equipment.

bisja Apprentice
bisja
Posted

Connie I get very sick from chex cereals, also am just coming out of being really sick off of the quaker rice cakes, will never try them again. I made the mistake of adding a couple new things in a row, one was the rice cakes and then I added yoplait yogurt, which I would have thought would be ok I do not have a problem with milk usualy, but I do think it made me sick just not sure.

conniebky Collaborator
conniebky
Posted
  • Author

Connie I get very sick from chex cereals, also am just coming out of being really sick off of the quaker rice cakes, will never try them again. I made the mistake of adding a couple new things in a row, one was the rice cakes and then I added yoplait yogurt, which I would have thought would be ok I do not have a problem with milk usualy, but I do think it made me sick just not sure.

I can't eat any yogurt and have no clue why. None of the brands....I've tried about four....I drink at least 1/2 gallon of milk a day. Well, I'll be dogged - I got two kinds of Chex yesterday and they both say SAME GREAT TASTE NOW GLUTEN FREE in huge letters on the boxes. They shouldn't be able to do that, it's not very nice. Now I've spent 8 bucks on something I only cannot eat, but that gave me a horrid reaction. They shouldn't just willy nilly be able to make a claim like that.

bisja Apprentice
bisja
Posted

They shouldn't beable to label gluten-free unless its really gluten-free! I think I need to make a list of things as I read that the super sensitive people do not seem to have problems with, tired of wasting money and real tired of getting sick from things that should be safe. So any suggestions from the all who are really sensitive on what brands seem safe?

laurelfla Enthusiast
laurelfla
Posted

Hello, all! Connie, I can't remember how long you've been gluten free, but if it hasn't been a very long time, your reactions may not be traceable to a particular food item. That is what happened to me at least, in the first few months after starting the diet. I kept a food log and everything and all it did was confuse me further! :P I would react to even vegetables and things I knew beyond a shadow of a doubt were gluten-free. In the end, I chalked it up to my body's healing process, as it took a while to get my digestion back to normal.

I certainly feel each person knows what's best for his or her body, so if your body rejects something, that's something to pay attention to. However, the General Mills Chex cereals are made on dedicated lines and according to the company, there's no chance for cross contamination. You'll notice the Trix cereal doesn't say gluten-free precisely because it is not produced on dedicated lines, so they don't make the claim for that product.

Also, I'm sure someone's already said this, but if you are drinking cow's milk you may want to take it easy or even pop a Lactaid... that can bring you down, too.

I just wanted to say, hang in there! Feeling emotional has always been one of my symptoms and it is not fun. :(

kareng Grand Master
kareng
Posted

Some days I just felt tired and some days not good. I think it was my body adjusting, flushing out junk(technical term ;) ) healing. If you don't feel well, keep the food simple. I have also noticed that vitamins upset my system. Had a vitamin free Sunday & my system and its products were almost normal. Buck up, girl! :P

Gemini Experienced
Gemini
Posted

Hi everyone. I have been doing SO GOOD on gluten-free except for coffee. Yesterday I wnt to the mark and ground my own coffee beans, figured that would eliminate an CC. So this morning I drank two full cups at home and had no immediate reaction. (I haven't been able to drink coffee without a reaction).

I haven't eaten anything today and last night I had Rice Chex cereal for supper. Then I was just walking outside and got all dizzy and freaky feeling and stomach cramps. Saturday we had a big family party and I drank bourbon and felt a little "different" yesterday, but not as exdtreme as the reaction I just now had.

Any ideas guys? I'm kinda shook up. :unsure:

Connie....I hate to say this but it sounds like you aren't eating well to begin with so maybe that might explain your dizziness. A bowl of cereal with lots of dairy for dinner? :blink: As I call it, cardboard and dairy...yum! ;) You drank 2 cups of coffee this morning.....did you have anything to eat with it? You need to eat healthy meals and definitely eat something with coffee, even if it's only a piece of gluten-free toast. It sounds like your blood sugar may be wonky as that can make a person very dizzy and crampy. I am a coffee lover also and drink 2 mugs every morning but I always have a good breakfast with it.

I'm really sorry you are not feeling well but start by eating better foods and make sure you eat breakfast....it makes a huge difference in how you feel. Try that because, like yourself, I am not giving up the coffee!

GFinDC Veteran
GFinDC
Posted

When I was still on soy I had bad reactions to coffee and tea. I finally gave them both up and that helped my energy stabilize. It took a while off soy before I really felt a lot better and didn't have episodes of almost passing out. Now I can drink tea a little but I keep it to a minimum, and not every day.

The simpler you make your diet to start out, the quicker you will be able to learn how it reacts to various foods. For a newbie I think the best way is to eliminate all processed foods (including gluten-free) and drinks. Plus soy and dairy and probably nightshades too. If you don't eat food in a box or a can for while you will remove a lot of hidden gluten sources. And you won't need to spend hours reading labels or researching gluten-free status of things to do your shopping. Think of all the time you will save! Plus you will mostly be free of preservatives and food colorings which are also possible allergens.

You might want to search on the top 8 food allergens as they are some of the things that might cause additional problems.

The gluten-free diet gets easier after a while. It takes time to learn new ways of doing things is all. Adjusting can be a rocky road at times but you can do it and we are all doing it too. It is nice to actually feel somewhat normal again I can tell you. Giving up a few foods is well worth the trade.

gf-soph Apprentice
gf-soph
Posted

You certainly have a few areas to look at already, and it could be gluten, but I thought I would chime in - if I am feeling relatively OK to start with, I can handle 1 cup of coffee max. If I am not too well to start with, even 1 cup can make me feel dizzy, unwell, and give me stomach cramps too, and sometimes not for a few hours. It's a good idea to drop the coffee out and see if it happens again. It may be that you are very sensitive to the coffee at the moment, and it is irritating to the gut anyway.

mommida Enthusiast
mommida
Posted

I feel like a jerk even to say this to you right now, maybe you should try casein free too. :huh: (There seems to be casein connected to some of the tummy troubles "milk in coffee and yogurt" Let your gut heal.

If there was a lot of damage happening to your body it doesn't magically disappear because you switched to gluten free. The mood swings are part of gluten withdrawal. For some gluten has an opiate affect. (casein can have this affect too) The lifestyle change is huge and you may have found your normal support system of friends and family just aren't there for you. That is very hurtful to a person sense of being. Add to all these things, you body has been starving for nutrients.

Cyber ((HUGS)) to you! Stay on track. You will get healthier and stronger from here! :D

Watch that you get some protein into your diet. Rice chex make me hungry an hour and a half after I eat them.

dilettantesteph Collaborator
dilettantesteph
Posted

They shouldn't beable to label gluten-free unless its really gluten-free!

Gluten free has to be defined somehow. Zero gluten is not testable. Some of us are sensitive to levels that are not testable, or at least at levels below those used to define gluten free. Most celiacs are able to eat these foods. Unfortunately for me, it does make sense to define gluten free at a level that most celiacs can tolerate, but not all.

Emsstacey Rookie
Emsstacey
Posted

Did you grind your beans at the store or at home? If you ground them at the store... then you could have had cc using the grinder that is used for multiple types of beans since most flavored coffees have gluten. Maybe?

If not... I notice that every morning after I drink my regular coffee with cream... I have to run to the bathroom and often feel bad for a while. I think I'm going to have to cut out the coffee completely. I'm trying to phase it out instead of cold turkey since I know I'll have one killer headache for a while.

bisja Apprentice
bisja
Posted

I wondered if the very sensitive people to small amounts of gluten could list a few products that they know are safe and thye have no problem with . Like I am wondering what brand of baking cocoa people use, or brands of cookies etc that you know are safe. I am to the point of being scared to try new things.

dilettantesteph Collaborator
dilettantesteph
Posted

I wondered if the very sensitive people to small amounts of gluten could list a few products that they know are safe and thye have no problem with . Like I am wondering what brand of baking cocoa people use, or brands of cookies etc that you know are safe. I am to the point of being scared to try new things.

You don't want to hear my answer. I can't find any chocolate that I can eat. I make my own cookies after the sort, wash, dry and grind technique. Last time I had just one bite of a gluten free cookie, (tested to below 20 ppm) it got me. I can have some juices, some cheese, some coffee, some tea, some booze, but no gluten free grain products.

jerseyangel Proficient
jerseyangel
Posted

I wondered if the very sensitive people to small amounts of gluten could list a few products that they know are safe and thye have no problem with . Like I am wondering what brand of baking cocoa people use, or brands of cookies etc that you know are safe. I am to the point of being scared to try new things.

I'm pretty sensitive and also can't tolerate tapioca which makes finding mixes and things like cookies somewhat challenging. I feel very comfortable with Enjoy Life products. The Snickerdoodles are very good, as are their trail mixes. I'm addicted to the Mountain Mambo variety.

For baking cocoa, I use Nestle's. I've never had a problem with it. Enjoy Life makes chocolate chips that are dairy and soy free, and I also enjoy their dark chocolate candy bars.

Gluten Free Pantry makes some excellent mixes--French Bread, Cornbread, Pancake (most excellent), Pie Crust, and Truffle Brownies. Glutino has good crackers and their Chocolate and Lemon Wafer cookies are delicious--they don't taste gluten-free to me at all. The Strawberry is also good, but a bit too sweet for my taste.

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    • trents
      how much gluten do I need to eat before blood tests?

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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