On The Couch For 2 Days!

[vbecton]

I just need to vent. Probably, blow a gasket!!

If you've read my posts before, you know that I don't lay around. EVEN, if I'm tired. I might take it slow, but I don't lay around. I have never felt worse in my life. I'm approaching month 4 on gluten free and I feel miserable. I'm pretty much anxious or scared to eat anything. I'm down to a few meats, rice, 4 different veggies, 4 different fruits and some oils. I constantly have "D". If I cut anymore out of my diet I'll will flat out starve to death. This cannot be normal!!!! I am reacting to EVERYTHING. My husband felt so bad for me yesterday trying to cook me some chicken that he had tears in his eyes. And he isn't a baby...at all. And why does my "D" show up at the same time every evening? Like clockwork.

I'm headed back to the doctor Wednesday to get results of all my testing from the last month. I know that the pill camera still shows signs of Celiac, there is also SIBO, blood tests showed rheumatoid arthritis, amino acid deficiencies, plus some others. My previous blood tests showed low white blood cells and hemoglobin.

All I have to say is that when this SH*T is over, I'm sending my story to Mystery Diagnosis. Because, I'm no gambler, but this cannot be just Celiac. I think I went gluten-free and body decided it was time to shut down.

If this is any indication of how miserable I am, I am skipping the gym today. And I usually go despite feeling like I'm going to pass out!

This crap sucks! As Justin Timberlake once said, "Cry me a river"

[poopedout]

I just need to vent. Probably, blow a gasket!!

If you've read my posts before, you know that I don't lay around. EVEN, if I'm tired. I might take it slow, but I don't lay around. I have never felt worse in my life. I'm approaching month 4 on gluten free and I feel miserable. I'm pretty much anxious or scared to eat anything. I'm down to a few meats, rice, 4 different veggies, 4 different fruits and some oils. I constantly have "D". If I cut anymore out of my diet I'll will flat out starve to death. This cannot be normal!!!! I am reacting to EVERYTHING. My husband felt so bad for me yesterday trying to cook me some chicken that he had tears in his eyes. And he isn't a baby...at all. And why does my "D" show up at the same time every evening? Like clockwork.

I'm headed back to the doctor Wednesday to get results of all my testing from the last month. I know that the pill camera still shows signs of Celiac, there is also SIBO, blood tests showed rheumatoid arthritis, amino acid deficiencies, plus some others. My previous blood tests showed low white blood cells and hemoglobin.

Perhaps you have microscopic colitis. I read that anyone with celiac disease who does not respond to a gluten free diet should be tested for microscopic colitis.

All I have to say is that when this SH*T is over, I'm sending my story to Mystery Diagnosis. Because, I'm no gambler, but this cannot be just Celiac. I think I went gluten-free and body decided it was time to shut down.

If this is any indication of how miserable I am, I am skipping the gym today. And I usually go despite feeling like I'm going to pass out!

This crap sucks! As Justin Timberlake once said, "Cry me a river"

Perhaps you have microscopic colitis. I read that anyone with celiac disease who does not respond to a gluten free diet should be tested for microscopic colitis.

[kayo]

Oh vbecton, my sympathy goes out to you. It's so frustrating. Hopefully the docs will figure it out.

I too feel like death warmed over and I'm reacting to everything. It's such a long road for some of us. Driving into work today all I wanted to do was turn around and go back to bed.

Off to look up microscopic colitis...

Hang in there!

[dilettantesteph]

When I was first diagnosed, I felt so much better just eliminating bread and cheerios. Then I got more sensitive and had to eliminate more and more. These days I feel great and did a mini triathlon recently. I have to be extremely careful about my diet though. I don't eat any gluten free processed grains. I sort and wash whole grains and things like beans. I only eat nuts that I shell myself. I don't eat chicken. For meat, I buy big (like $50 - $75 big), and wash, cut off fat, wash again and cut up. For seafood, I make sure I get the first ones out of a new batch with new gloves. I've been glutened by seafood otherwise. I don't eat in restaurants, and we have a gluten free household. I won't kiss gluten eaters until they are well cleaned out. I've been glutened that way too. I only add one new thing per week and I watch everything. It seems like some of us are sensitive to such low levels of gluten that we have to be that careful.

You could have something else wrong, or you could be like me. If hope that you can figure it out.

[vbecton]

Thanks guys for the good cheer! I'm going to mention to my GI about the microscopic colitis. In fact, that's the only test I haven't done lately...the rear shoot colonoscopy! So, that seems to definitely be a possibility. I know I'm positive for SIBO and that runs hand in hand with microscopic colitis. Hmmm. Thanks for the idea.

dilettantesteph, I sure hope I don't have to be so picky the rest of my life. However, if it means not running to the toilet every 5 seconds, then I'm game. Why don't you eat chicken? I try to buy organic, or even buy a full-on locally raised organic chicken from my neighbors when possible. I live in the country What type of meat are you eating? I don't eat seafood. Never have been able to tolerate the smell, no matter how fresh. Makes me want to projectile vomit. So sad because that would greatly increase my food variety!!!!

[vbecton]

Oh vbecton, my sympathy goes out to you. It's so frustrating. Hopefully the docs will figure it out.

I too feel like death warmed over and I'm reacting to everything. It's such a long road for some of us. Driving into work today all I wanted to do was turn around and go back to bed.

Off to look up microscopic colitis...

Hang in there!

Thanks for the spreadsheet by the way!!! It has helped me map out my food.

You aren't feeling better either? How long have you been gluten-free? I feel like a big baby crying over this because I have the liberty of being a stay-at-home-mom. I couldn't imagine dealing with this with a real job....well, one who cares whether I do my job from the toilet anyway .

I'm no doctor, but it sure seems the small intestinal bacteria overgrowth can cause major issues. It can also run with microscopic colitis. I'll let you know what my GI says on Wednesday. Sadly, I sometimes feel like just being admitted to the hospital so I can get some answers. BUT, I've heard tooooo many horror stories about trying to eat gluten-free in a hospital, let alone eat free of all the other things we can't eat. It would be a nightmare.

Hope you feel better too!!

[georgie]

Perhaps you need to be tested for FODMAP. You may be reacting to the fruit. Or Fructans.

[vbecton]

Perhaps you need to be tested for FODMAP. You may be reacting to the fruit. Or Fructans.

Great minds think alike! I'm actually avoiding all FODMAP's at the moment. Which, is probably why I feel like I have no variety when you add that to the no dairy, soy, corn, legumes, etc...

I'm still having issues despite no FODMAP's. My doctor doesn't do the breath testing for fructose malabsorption as it's unreliable. But, he said trying the diet is a better indication of how my body responds. Unfortunately, my body doesn't like anything . I wished the FODMAP diet included margaritas because I would get saucy on tequila

[georgie]

Great minds think alike! I'm actually avoiding all FODMAP's at the moment. Which, is probably why I feel like I have no variety when you add that to the no dairy, soy, corn, legumes,

I am not sure if I understand. What fruit are you eating ? Most fruit is off the FODMAP diet. I am Celiac + FODMAP myself.

Is there a reason for being Dairy Free ? FODMAP does not promote Dairy Free. If you react to lactose ( as per testing ) then you need Lactose Free which is another thing altogether. Hard cheese has virtually no lactose. Cream. Butter. And Dr Sue Shepherd also advises that small amounts of lactose may be fine ( ie milk in coffee) to help prevent the "super sensitive" situation. And then there are always lactose free milks and lactase tablets of course.

Is there a reason you are not eating bread, waffles and cakes ?

Are you able to get to a Sue Shepherd trained dietician or get her books or tapes? She does phone consults as well. As FODMAP is new - some info from the web is old and out of date. Monash University in Melbourne has the latest research.

I wished the FODMAP diet included margaritas because I would get saucy on tequila

A glass of wine is OK though

[vbecton]

I am not sure if I understand. What fruit are you eating ? Most fruit is off the FODMAP diet. I am Celiac + FODMAP myself.

Is there a reason for being Dairy Free ? FODMAP does not promote Dairy Free. If you react to lactose ( as per testing ) then you need Lactose Free which is another thing altogether. Hard cheese has virtually no lactose. Cream. Butter. And Dr Sue Shepherd also advises that small amounts of lactose may be fine ( ie milk in coffee) to help prevent the "super sensitive" situation. And then there are always lactose free milks and lactase tablets of course.

Is there a reason you are not eating bread, waffles and cakes ?

Are you able to get to a Sue Shepherd trained dietician or get her books or tapes? She does phone consults as well. As FODMAP is new - some info from the web is old and out of date. Monash University in Melbourne has the latest research.

A glass of wine is OK though

You are making my brain work...I like it!! I have been reading the Sue Shepherd information, as well as what comes from Monash. I never thought about a phone consult! Good idea. I've got the Patsy Catsos (IBS-Free at Last) book and it follows what comes from Sue and Monash. Although, I don't think the book is highly scientific, it gives the basics.

I'm eating bananas (but only 1/2 per day in my protein shake), and some berries, and 1/2 a grapefruit...never at the same meal. I'm eating carrots, broccoli, fennel and some lettuce (green leafy, spinach), pumpkin and potato...maybe a few more too that I'm forgetting. I'm very NEW to FODMAP...like 2 weeks.

And the dairy isn't a lactose problem (that I know of), but a whey & casein issue. I can't tolerate those proteins to save my life. Most everyone on the planet can tolerate whey isolate, but not me .

I'm refraining from most grains because "they" told me too. ha! Most everyone on here recommends abstaining from grains in the beginning, but I had voluntarily began that because I was following (and loving) the Paleo diet before I started hyperreacting to foods. I'm not much for processed foods anyway. But, I'm not against learning to love them either!

I'm going to request a dietician from my GI this week. I've been wanting to see a nutritionist, but they aren't covered under insurance and they charge crazy fees! I think a dietician should be covered and, hopefully, a Sue Shepherd one!

Any other ideas, keep'em coming! Give me some more info about FODMAP. What's a typical day of food look like for you?

[georgie]

Sue Shepherd has some great cookbooks as well. Have you found her site ? Open Original Shared Link

I am new to this also - only 2 months ago. I really urge you to try hard cheese. Dairy is so important and I went dairy free for 2 years and severely regret it. I am lactose intolerant only but thought I was casein. I cannot tolerate whey either but normal food like butter, cream and hard cheese is fine My worst FODMAP allergen seems to be onion which is a fructan. And I react badly to apples and most fruits. I have discovered some ( sugar ) dried blueberries which are fine for me. Everyone varies a little in what they can tolerate. I also react badly to sorbitols and that family. Even fruit can be tolerated if you put glucose with it. Apple pie etc. What about rice ? I eat a lot of rice - Indian curries,asian stir fries etc. I have a European range of pasta and bread here called Schar. It is brilliant and we use the spaghetti as noodles for stir fries. I also use an Aust company here that does a very good pre mix that is allergen safe. Brighterlife. I am not sure if you can get it there or anything similar. That is what I make my waffles with and also muffins and cakes. Open Original Shared Link

Have you discovered almond flour baking ? Open Original Shared Link Check with Sue re almonds. I believe w/out skins that they are OK for FODMAP but everyone varies. I have the choc chip almond flour cookies in my freezer at all times for emergencies

Our entire house is gluten-free as well. Hubbie eats the same as me. There is no way he allows Gluten into the house. Have you checked that idea?

I know Sue has a tape for remote training, and I have heard she may even be going to USA for clinics- so check with the Melbourne clinic as they may have some info there. Try to get the breath tests done as then you will feel more confident that you are heading in the right direction re FODMAP. It helps to know sometimes.

[vbecton]

Sue Shepherd has some great cookbooks as well. Have you found her site ? Open Original Shared Link

I am new to this also - only 2 months ago. I really urge you to try hard cheese. Dairy is so important and I went dairy free for 2 years and severely regret it. I am lactose intolerant only but thought I was casein. I cannot tolerate whey either but normal food like butter, cream and hard cheese is fine My worst FODMAP allergen seems to be onion which is a fructan. And I react badly to apples and most fruits. I have discovered some ( sugar ) dried blueberries which are fine for me. Everyone varies a little in what they can tolerate. I also react badly to sorbitols and that family. Even fruit can be tolerated if you put glucose with it. Apple pie etc. What about rice ? I eat a lot of rice - Indian curries,asian stir fries etc. I have a European range of pasta and bread here called Schar. It is brilliant and we use the spaghetti as noodles for stir fries. I also use an Aust company here that does a very good pre mix that is allergen safe. Brighterlife. I am not sure if you can get it there or anything similar. That is what I make my waffles with and also muffins and cakes. Open Original Shared Link

Have you discovered almond flour baking ? Open Original Shared Link Check with Sue re almonds. I believe w/out skins that they are OK for FODMAP but everyone varies. I have the choc chip almond flour cookies in my freezer at all times for emergencies

Our entire house is gluten-free as well. Hubbie eats the same as me. There is no way he allows Gluten into the house. Have you checked that idea?

I know Sue has a tape for remote training, and I have heard she may even be going to USA for clinics- so check with the Melbourne clinic as they may have some info there. Try to get the breath tests done as then you will feel more confident that you are heading in the right direction re FODMAP. It helps to know sometimes.

BTW, I love Australia. I have spent many a' months in that great country, on many trips. I tried to find an Aussie to marry me, but no such luck .

Great idea about the stir fry's with noodles. I'll get the cookbook because I need help on the sauces. That seems to be my biggest cooking obstacle...finding sauces that I can use that won't make me sick.

Our house is gluten free. Hubby & kiddos eat gluten-free also, but eat some gluten when out (although not much). I'm definiely a fan of almond flour, although I'm not doing much baking.

I want the breath test done, but my doctor said there isn't a reliable place here for them as our technology, or way of thinking, hasn't caught on yet. He's definitely a believer in FODMAP intolerance, just not in the diagnosing being used here.

I will try the hard cheeses and such. What's the worst that can happen..."D"...What's a little more time with the porcelin goddess?! The benefit of reintroducing dairy far outweights the negative!!

Onions are the devil to me also! I can't tolerate them for anything. What about beans? Can you eat any beans?

Thanks for all the additional websites!! My bestie lives in Melb and can send me anything you guys might have that I can't get here. And yes, I definitely want a firm 100% diagnosis because otherwise it's like playing darts in the dark! I'm hoping my appt. this week will really shed some light. I missed working out today...I hope this isn't a trend.

[kayo]

Thanks for the spreadsheet by the way!!! It has helped me map out my food.

You're welcome, glad it's helpful.

You aren't feeling better either? How long have you been gluten-free?

It's weird, in some ways I'm better and worse in others. The bloating is gone. I no longer look pregnant. The gas is gone and the feeling of feeling constantly hungry. But all food is bothering me and causing big D. I was out sick twice last week and my weekend was a bust.

Doc thinks my body is producing too much histamine which causes my gut to react to every food as if I'm allergic/intolerant of it. He put me on a histamine blocker and I think it's working. The pain is less sharp but still having big D. It'll take a week or more to know for sure.

I'm no doctor, but it sure seems the small intestinal bacteria overgrowth can cause major issues. It can also run with microscopic colitis. I'll let you know what my GI says on Wednesday.

Please do. I hope you get some answers. I think the SIBO has really messed me up too and I worry it's either not fully gone or it's going to come back. BTW, the FODMAP diet is supposed to keep the SIBO at bay so I'm sticking with it. It does seem to help. For example haven't had any GERD or heartburn since starting the diet. I think onions and garlic were killing me.

Hope you feel better too!!

Thanks, you too!!

edited to add: I think the fructose test is unreliable. I had it done and it was negative which shocked me and my docs. If I stray off the FODMAP diet my symptoms come raging back. I think the diet is more reliable than the test.

[dilettantesteph]

dilettantesteph, Why don't you eat chicken?

When I do, I feel like I've been glutened. I don't know why. Last time for meat, I got a leg of lamb, washed it carefully and cut it into steaks. That worked well, but it was gross cutting it up. I also get sea scallops. I request that they guy put on fresh gloves and get me some out of a new package. When I got some the normal way, I got very sick.

It is a pain to eat this way, but much better than pooping in my pants!

[Chakra2]

I am so sorry you're dealing with all of that. Just wanted to mention to a fellow H-towner that I love my nutritionist. Dr Cynthia Tait at Whole Health Associates near downtown/River Oaks/Montrose. She sometimes tells me VERY different things than what my doctors (and especially pediatrcian) tell me but her advice has worked for me when other things have not. She has personal and professional experience with managing autoimmune diseases with diet so I like that too. Hope you find answers soon.

Chakra2

[georgie]

BTW, I love Australia. I have spent many a' months in that great country, on many trips. I tried to find an Aussie to marry me, but no such luck

Hey - you should have met my bachelor brother

Maybe you can get food parcels sent over from your Melbourne friend. Or plan a holiday! Make sure you bring lots of peanut M & Ms though Our M & Ms have gluten!

[vbecton]

I am so sorry you're dealing with all of that. Just wanted to mention to a fellow H-towner that I love my nutritionist. Dr Cynthia Tait at Whole Health Associates near downtown/River Oaks/Montrose. She sometimes tells me VERY different things than what my doctors (and especially pediatrcian) tell me but her advice has worked for me when other things have not. She has personal and professional experience with managing autoimmune diseases with diet so I like that too. Hope you find answers soon.

Chakra2

Hi Chakra2. Thanks for the nutritionist info. I would definitely take the advice of a nutritionist, or dietician. I was referred to a nutritionist, but her prices were astronomical just for a consultation....and 1 hour at that. I'll look her up. That's actually the area I used to live in. I *heart* Montrose!!!

Thanks!