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justme

Sooo Frustrated

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I am sooo frustrated right now... I have had digestive issues for as long as I can remember.. to make a long story short I went to and from doctors to be told "there is nothing physicially wrong with you" "you have IBS, eat more fiber".. a couple of weeks ago I tested positive for gluten.. so for a couple of weeks now I have been gluten free but still having problems.. I figured hey.. maybe I have a problem with dairy.. so I cut that out now too.. still having problems! I don't know what else it could be.. I have a severe blood phobia and avoid blood tests at all costs.. can anyone recommend another way for me to find out what the problem is? I can keep a food diary but there does not seem to be any rhyme or reason and the problems I run into do not happen right after I eat a certain food so it's kind of hard to tell if its something that I ate for breakfast lunch or dinner from the night before.. ahhhhh! If I have to be sooo careful about what I eat.. I want to atleast still not feel this way!!

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I am sooo frustrated right now... I have had digestive issues for as long as I can remember.. to make a long story short I went to and from doctors to be told "there is nothing physicially wrong with you" "you have IBS, eat more fiber".. a couple of weeks ago I tested positive for gluten.. so for a couple of weeks now I have been gluten free but still having problems.. I figured hey.. maybe I have a problem with dairy.. so I cut that out now too.. still having problems! I don't know what else it could be.. I have a severe blood phobia and avoid blood tests at all costs.. can anyone recommend another way for me to find out what the problem is? I can keep a food diary but there does not seem to be any rhyme or reason and the problems I run into do not happen right after I eat a certain food so it's kind of hard to tell if its something that I ate for breakfast lunch or dinner from the night before.. ahhhhh! If I have to be sooo careful about what I eat.. I want to atleast still not feel this way!!

You should check out enterolab and their stool testing. You have not been gluten free very long and it can take a while to heal. Cutting out dairy is often a good idea for a bit. The villi that help you digest milk proteins are the same ones that gluten damages. Many can add dairy back in after 6 months or so of healing. You may be able to tolerate yogurt, which would be great for you if you can. Also make sure you have deglutened your kitchen, don't share a toaster or cutting boards. Be aware also of the non-food sources of gluten like shampoos, make-up, other toiletries, OTC and prescription meds, houshold glues and craft materials. It can be tough at first to get used to but it gets easier. For some things seem to get a bit worse before they get better and it can be a real emotional rollercoaster ride for a couple weeks or more but you will get through it. I hope you start feeling better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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justme-

it is frustrating! but we are here to help. Give us an idea of what types of things you are eating. we might be able to find hidden sources of gluten. Are you eating out at all?

The other thing is that since you have "only" (and, I know, it feels like a lifetime already!) been gluten-free for a few weeks, you are probably not healed yet. It takes most of us months (and beyond) to fully heal. Even though you may be eating gluten free, your body is still reacting and recovering and trying to build itself back up.

Give us some more info, and hopefully we can help. Hang in there!

Laura

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Yup..hang in there. Your body needs lots of time to heal. It took me five months of being absolutely dairy-free before I felt the results. But the long wait is worth it.

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I know I sound like a broken record sometimes, but make sure to rule out anxiety as a problem. You sound just like I used to be, and it turned out I was suffering from anxiety. I didn't know it because I didn't feel anxious, but when I started anxiety meds, all of my stomach troubles disappeared. Turns out anxiety really can cause real physical symptoms OTHER than panic attacks.

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I know I sound like a broken record sometimes, but make sure to rule out anxiety as a problem. You sound just like I used to be, and it turned out I was suffering from anxiety. I didn't know it because I didn't feel anxious, but when I started anxiety meds, all of my stomach troubles disappeared. Turns out anxiety really can cause real physical symptoms OTHER than panic attacks.

I don't think you sound like a broken record! I'm very interested in how you figured this out. I do suffer from anxiety, and although I haven't had a panic attack since going gluten-free 14 months ago, I still get terribly anxious (to the point of being paranoid) when glutened. Even when I feel fine, I tend to over-think everything, have palpatations, and am still letting my fear of getting sick hold me back from doing things that I would like to do.

My fear of antidepressants are that I have heard they are very difficult to come off of. I have a friend who's daughter has been on Paxil for years, and has so much trouble when she tries to wean off that she stays on it.

I plan to speak to my doctor about this when I see her in late October. Is it safe to continue on a very low dose of medication indefinately? Do you have any side effects?

I don't mean to pry, I'm genuinely interested in your experience. :) Thanks!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I plan to speak to my doctor about this when I see her in late October. Is it safe to continue on a very low dose of medication indefinately? Do you have any side effects?

Patti,-I'm have the opposite fear-feeling like I did before I took antidepressants!

I've been taking mine for 6 yrs now (although I've halved the dose)and I probably should try and get off it,but you know,at my worst I just couldn't function because of the paralysing anxiety & insomnia and I can't take that risk of ever being like that again :blink:

(No side effects as yet!?)

:)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Thanks Nikki. Six years? Wow--so they are not something that you necessarily have to come off of?

I've tried to do this naturally through diet, etc. but I'm watching time go by and there's still that nagging undercurrent. I'm sure that you understand.

Sorry to hijack this thread with my own problems--maybe I should start one! :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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At first I took Effexor, which was hard to wean off of. But now I am taking Cymbalta, which I can stop at any time. I also tried Lexapro, which I was able to stop easily. So, don't necessarily believe that all anti-depressants are hard to go off; only certain ones are.

I tried all natural remedies before trying meds-yoga, exercise, meditation, relaxation techniques, over the counter things like Gaba and 5-HTP, dietary changes. Nothing took away my symptoms. I never got panic attacks, I just had terrible stomach troubles, dizziness, hearing my own heartbeat, fatigue, muscle aches, headaches, those kinds of things. That's why I saw so many dr's..I was absolutely convinced my problem was physical, not anxiety. I actually laughed at my dr when suggested it.

But when I finally broke down and tried the meds, all, and I mean ALL of my symptoms completely disappeared. The only reason I went off Effexor was it gave me night sweats. So I tried Lexapro but it didn't really work for me. That's when I started Cymbalta about a month ago and I am loving life and feeling normal again. I wish I had tried this sooner instead of suffering so terribly for so many years. I don't care if I have to stay on it because I have no side effects whatsoever. :)

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jknnej--Thanks so much! That's great that this was the answer to all of your symptoms. I do plan to persue this further. I'll let you know--thanks, again :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Well, in a way, I hope you do have anxiety because it is easier to treat and not as serious as another health issue! I think a LOT of people here probably have anxiety and just don't realize it. I have a close friend who, for YEARS was sick and feeling unwell in general. She went to every doctor under the sun, all kinds of tests, etc. I tried to tell her she may have anxiety but she always shot down the idea.

Finally, three months ago, she got so fed up and the doctors would do no more tests on her. She tried Lexapro and she is fine now! She keeps telling me, "You tried to tell me for so long but I just wasn't ready to listen to you." She was just in denial that it could be anxiety, as I had been.

I know many people here have diagnosed illnesses that make them sick but I guarantee you at least a portion of those suffering on this board could be cleared up entirely if they tried anti-anxiety meds.

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Yup..hang in there. Your body needs lots of time to heal. It took me five months of being absolutely dairy-free before I felt the results. But the long wait is worth it.

so is there nothing else i should be cutting out? i just dont want to keep eating something that could be a problem and making things worse.. ya know??

yesterday

breakfast:

envirokids cereal with soy milk

oj

lunch: from a restaurant called mamas that has gluten free items

gluten free pasta with veggies garlic and oil

gluten free bread

dinner:

gluten free fries and chicken fingers

symtoms started around here

today

breakfast:

envirokids cereal with soy milk

oj

lunch:

gluten free pasta with gluten and dairy free "butter" and chopped garlic

snack:

dried pineapple (nothing but pineapple)

started feeling symptoms right around now

dinner:

i read that wendy's chilli is safe and i am now eating a salad with gluten free salad dressing.. but just realized it has milk in it.. grr

what does enterolab or whatever test for?

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You can check out Enterolab at www.enterolab.com. They test for several intolerances -- gluten, casein and soy. Maybe also egg.

Anytime you eat at a restaurant you take a risk. I have pretty much quit eating out until I heal. There is always a risk of contamination even if they have a gluten-free menu.

Not to judge, but your diet is high in processed foods and carbohydrates. These are foods that are naturally gluten-free and loaded with nutrients -- meat, chicken, fish, eggs, fruit, vegetables, potatoes, and rice. If you start with that, you will save $ over buying gluten-free replacement products.

I know it sounds like more cooking, but I find that I can fix my meals pretty quickly on a skillet. I just put in some olive oil and sautee whatever I am having. I sprinkle on some herbs after it's cooked. It's pretty quick. My skillet is a well-seasoned cast iron one (always gluten-free), and just needs to be rinsed afterward. For the potatoes and rice, I pre-cook them so that they can just be heated in the skillet with whatever else I'm eating. It's too much work to cook potatoes and rice for breakfast or lunch!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Dear Justme, I agree with Carla, for one thing skip the cereal, IMO you should not add cereal to your diet until you are at least 6 months gluten-free - well unless you are so healthy that you have excess energy etc. B)

For breakfast try fruit, scrambled eggs, ham, bacon, or turkey

For lunch how about a homemade chef salad with lots of spinach, kale, cabbage

For dinner meat, & veggies, with fruit for dessert.

It is a mistake to try to replace things in your old diet with gluten-free replacements, you can do it, but you will not get better as fast. IMO one needs to strive to include 3 to 5 fruit servings and as many veggie servings with a serving or two of meat or other protein each day. This varies for each person, I am a low protein high fruit & veggie person. The gluten-free grains should only be added when you are way on the way to being healed.

Try using Lundberg Rice Chips, & Lundberg Rice cakes & White corn tortillas to get you thru those times when you need something to replace bread.

I also hope you double check the cleaning out the gluten from your kitchen like someone else posted, this is really harder to do than it seems - example: do you have a knife rack? Little bread crumbs will be in those slots.

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Dear Justme, I agree with Carla, for one thing skip the cereal, IMO you should not add cereal to your diet until you are at least 6 months gluten-free - well unless you are so healthy that you have excess energy etc. B)

For breakfast try fruit, scrambled eggs, ham, bacon, or turkey

For lunch how about a homemade chef salad with lots of spinach, kale, cabbage

For dinner meat, & veggies, with fruit for dessert.

It is a mistake to try to replace things in your old diet with gluten-free replacements, you can do it, but you will not get better as fast. IMO one needs to strive to include 3 to 5 fruit servings and as many veggie servings with a serving or two of meat or other protein each day. This varies for each person, I am a low protein high fruit & veggie person. The gluten-free grains should only be added when you are way on the way to being healed.

Try using Lundberg Rice Chips, & Lundberg Rice cakes & White corn tortillas to get you thru those times when you need something to replace bread.

I also hope you double check the cleaning out the gluten from your kitchen like someone else posted, this is really harder to do than it seems - example: do you have a knife rack? Little bread crumbs will be in those slots.

this is going to sound like a really weird question.. but wouldn't eating that many fruits and veggies contribute to bloating and gas?

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Dear Justme, I agree with Carla, for one thing skip the cereal, IMO you should not add cereal to your diet until you are at least 6 months gluten-free - well unless you are so healthy that you have excess energy etc. B)

For breakfast try fruit, scrambled eggs, ham, bacon, or turkey

For lunch how about a homemade chef salad with lots of spinach, kale, cabbage

For dinner meat, & veggies, with fruit for dessert.

It is a mistake to try to replace things in your old diet with gluten-free replacements, you can do it, but you will not get better as fast. IMO one needs to strive to include 3 to 5 fruit servings and as many veggie servings with a serving or two of meat or other protein each day. This varies for each person, I am a low protein high fruit & veggie person. The gluten-free grains should only be added when you are way on the way to being healed.

Try using Lundberg Rice Chips, & Lundberg Rice cakes & White corn tortillas to get you thru those times when you need something to replace bread.

I also hope you double check the cleaning out the gluten from your kitchen like someone else posted, this is really harder to do than it seems - example: do you have a knife rack? Little bread crumbs will be in those slots.

what about envirokids ceral.. its organ with 3 ingredients!!! corn meal, evaporated cane juice and sea salt.. i dont understand how that could be bad.. :(

today i had:

breakfast:

oj

omlet with onions, green pepper and mushrooms

red potatoes boiled in water with garlic

lunch:

some athenos hummos on rice crackers (ingredients rice and oil)

some rolled up boars head coldcut chicken

coffee with silk milk

snack:

nectarine and peanuts

now i am having symptoms :(

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ditch the rice crakers & check the milk stuff, some of it has barley

some of us cannot do grains

I believe that all grains are cross contaminated. It does not bother some people but it really bothers some of us. Unfortunately we do not get to choose which ones we will be !!!!

I do not know what athenos hummos is. What is it?

just my personal observation but oj is very hard on your system. I would switch to diluted 100% grape juice or cranberry juice.

Also, how long have you been gluten-free? Did you clean your kitchen? as in tossing the old cutting boards, wooden spoons, teflon pans, cast iron skillets, old tupperware that had been used for wheat stuff?

Are you sharing a kitchen with someone else that is not gluten-free? If so that is your cross contamination. I am so sensitive that if someone has been eating a wheaty thing & then they touch my keyboard & then I touch my keyboard & start eating a snack with my fingers, whammo - I am SICK.

Sorry to be the bearer of bad news on the grains, but really you should skip that stuff till you are feeling better then just add one in at a time to see if you get a reaction. & yes only three ingredients can still have cross contamination & make you sick.

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Just me,

I have some suggestions. For starters, you may have hypoglycemia. Your diet is really heavy in carbohydrates which can cause a surge of insulin in your system, which can then bring your blood sugar down and make you feel really bad. Eating meals heavy in carbs can do a number on your blood sugar balance. Try eating some eggs and gluten-free sausage in the morning, maybe a little fruit. For lunch, how about some vegetable chicken soup. :P For dinner maybe a chicken and vegetable stir fry.

I think you may find that eating foods that include ample amounts of protein and well cooked vegetables will help speed the healing process. Since youve been gluten free for a few weeks, your still healing your intestinal lining. You might want to consider eating foods that you can digest easily. I highly recommend chicken soup with vegetables for one of your daily meals. The reason why is because soup is easily absorbed and your body doesnt have to work so hard to digest it, this way you can get some accessible vitamins into your system.

I hope you feel better soon.

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this is going to sound like a really weird question.. but wouldn't eating that many fruits and veggies contribute to bloating and gas?

My doc has told me that part of my problem is adrenal fatigue. Some of your symptoms may not be from gluten (keep looking for contamination problems though), some may just be a result of being run down from ill health. Do a search on adrenal fatigue and adrenal burnout and see if it sounds like you. If it is, it's very important to eat at least five meals per day, along with other things to rebuild health. In those five meals it's important to have a balance of protein and carbs. Your carb can be a starchy vegetable, it doesn't have to be rice or potatoes -- tonight mine was beets. Actually, this diet says minimal fruit because of the sugar content, not that fruit is bad, just if your adrenals are fatigued. But you must have protein with every meal.

I find that my stomach is so sensitive right now I have to have well-cooked veggies (not how I used to eat them!) and cooked meat. Any raw food rips me up. My diet is very simple, till I heal more, then I'll add things back in. As bad as I'm doing, I'm still doing better than I was a week ago! My current problem has to do with how worn down I was with stress -- from life and from my system being taxed for 43 years by eating something that my immune system attacked! My gluten problem is actually under control! :rolleyes:


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I actually eat a lot of fruits and veggies now. Mostly cooked, but I do eat a large salad every day for lunch. I don't get gas and bloating unless I add in the foods I'm intolerant to. (and there are a lot of them!)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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ahhhhhhhhhhhhhh!!!!!!!!! i just want to scream because i simply cannot cry anymore!

eat rice don't eat rice eat veggies but yet raw food no eat fruit dont eat fruit eat soup

hypoglycemia?? wouldn't that come up in the blood test??

adrenal fatigue does not sound like me.. i am not having trouble with fatigue

deglutenize a kitchen that OTHER people use??? ahhhhhhhhhhhh!!!

I just want to be able to eat without feeling like s**t and getting extreme bloating and gas!

I am sooo sick of this.. :(

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Justme, I feel for you. Yep, it is going to hard for you to understand but you are getting gluttened in your kitchen. IMO, That is what is causing the gas & bloating. It is almost impossible not to be getting gluten in the kitchen, if it has not been deglutened!! I bet if you ate at my house for a week you would be fine. I do not allow anything gluten past the driveway ! B)

eating cooked rice is okay, but rice in rice crackers is treated like a grain & also processed in a facility that makes wheat things - it should say on the package. Plus with rice that you cook, you should rinse it a couple of times, before cooking.

Eveyone here is spot on as what to eat. Boil yourself up some chicken, slice in some carrots, & cabbage. That is it, you should be able to eat this safely with no problems. Also, I eat almost all day long. If I have a fruit plate for lunch I always have a piece of meat and or nuts with it, for protein. The lucky ones of us can also eat cheese. If you have a banana as a snack also have a little protein. Also, my favorite advice is to eat a baked sweet potato those things are packed with nutrients & easy to digest.

If you think it is a food that is giving you a problem and not the cross contamination - & it could be both, just eat the same thing for one day & see how you feel. Then the next day add in one food.

If there is a counter or somewhere in your kitchen that you could make your own area - some people do that. Also, some people just turn the whole house gluten-free, it will not hurt anyone to eat gluten-free & they can eat gluten outside the house. Sometimes the people that thought they had no problems have all sorts of good things happen to them when they go gluten-free with a spouse etc. & they adopt that way of eating for themselves.

what you are going thru is the withdrawal and adjustment to a way of eating that you really do not want to have to do. It is not easy at first, there is a huge learning curve. But this time next year you will not give it much thought because it will be a habit & you will be off doing something fun enjoying your life instead of being sick & having a puffy tummy.

I promise it does get better {{{{hugs}}}}

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