Beyond Frustration... What Can I Eat Now?

[jayhawkmom]

In another post, I reported that I had my endoscopy yesterday. I don't know the results, but I do know that my small intestines were red, inflammed, etc. I started my 100% gluten-free diet yesterday.

But, I was also diagnosed with a fairly serious case of GERD. I didn't realize that GERD could BE as serious as I was told mine is. I have scarring from years of acid issues, and my esophagus is narrowing (which has been the cause of my constant "whoops, swollowed that down the wrong pipe" issues. Not the "wrong pipe" --- narrowed pipe.

So, my GI put me on a strict diet to accomodate both the GERD issues as well as the gluten issues.

I swear, there's nothing left for me to eat.

I'm TRYING to go with the attitude that "fuel is food" and that's the ONLY reason one needs to eat. But, being SO restricted is really angering me.

However, my grandmother passed away after battling with larynx and esophageal cancer. Hers was due to years of refusal to quite smoking, despite the begs and pleads from her family. My esophageal issues can be controlled soley by diet. I can control this. But right now... I feel like it's controlling me.

All the "non-gluten" foods that I love have been stripped out of my diet. I can't eat tomatoes. That's one of my all time favorite foods. No ketchup.... I put ketchup on everything. And, no ketchup (or BBQ sauce) on meat will mean I don't eat meat. I can't have fresh fruits (mainly citrus and apples), chocolate (OMG!), and a whole host of other things.

I'm just SO frustrated. Please... I just need some words of empathy, understanding, and support.

[burdee]

Focus on what you CAN have. Can you eat fresh vegies? meats? glutenfree grains? ANY fruits? dairy? nuts or nut butters? I recently tested for more food allergies (ELISA) as well as bacteria, yeast and parasites. My doc originally suspected Candida. So I did the VERY restricted Candida diet for 3 weeks (no sugar, yeast, vinegar, moldy foods, fruit and limited carbs as well as no gluten or dairy or soy for which I already have positive test results and/or empirical evidence). After 3 weeks of anti Candida diet, I was soooo relieved to learn I ONLY have 2 more food allergies, EGGS and CANE SUGAR, plus Klebsiella bacteria. I never really tested for soy, but that came up negative on ELISA, despite my experience. So I also tested for egg, yeast and soy with Enterolab, just to confirm eggs and soy results from ELISA. Despite all those restrictions there are LOTS of foods available to eat. Best of all I am slowly recovering from lifelong digestive pain, bloating, and fatigue.

BURDEE

[Ursa Major]

Hi Kris, I am happy you found us. You know, the GERD is likely caused by the celiac disease. Once your intestines have healed, the GERD may go away. It will take time, of course. The damage done to your insides over the course of years may also take years to heal. Be patient (I know, easier said than done).

If you look at my signature, you would find out that I am even more restricted in what I can eat than you. I've been eating only meat and vegetables (and a limited choice of those at that), with peeled pears the only fruit (some lime juice is okay), salt the only seasoning, maple syrup the only sweetener, and cold pressed sunflower oil and lard the only fats (other than what is on meat, but I cut off any visible fat because I hate the texture of fatty meat).

And you know what, I am still alive, and much better than I was. You will adapt, you have no choice. As for not eating meat if you can't have ketchup, you better change your mind on that if you want to be healthy and recover.

White chicken meat is the meat of choice at the beginning, as it's fairly easy to digest. Be inventive, try some new recipes, focus on what you can still eat, instead of what you can't eat.

It's okay to be angry and upset. Just don't stay there too long, try to find some positives every day, or you'll end up depressed! You can do it!

[jayhawkmom]

Can you eat fresh vegies? meats? glutenfree grains? ANY fruits? dairy? nuts or nut butters?

Therein lies the problem. Yes, I can eat SOME fresh veggies - but not a lot of the ones I like... no peppers, broccoli, cauliflower, onions...etc. I can't eat fresh fruit. I'm lactose intolerant, so I can't do dairy. And, my daughter has a life threatening allergy to peanuts/tree nuts ---- so I can't eat nuts.

Ursela - I just got a rice cooker today and I made myself a big old crock of organic brown jasmine rice and steamed some carrots with a little soy margerine. It was really quite good! =)

I know I'm going to be a lot healthier, but it's so frustrating.

Oh, and thanks for the information regarding GERD getting BETTER after removing gluten!!! THat could be a real good thing!!!

[burdee]

Lemmessee ... That still leaves eggs, all kinds of meats, poultry, fish, lots of gluten free grains, rice, coconut and soy milks and dairy substitutes, oils (plus avocados, olives and other fats), and lots more vegies and fruits to investigate. Look through a farmer's market or Whole Foods. You might find something you haven't tried which you might like.

I agree with Ursula about the GERD. I had pretty bad reflux for YEARS before I eliminated gluten and dairy (I was on tagament and zantac for awhile). Then I still had occasional reflux before I eliminated eggs and cane sugar. My doctor (who wrote "The IBS Solution") says that problems in the small intestine like celiac disease or anything that causes malabsorption or IBS symptoms (such as food allergies, bacteria, parasites or yeast) can cause reflux, because the food doesn't leave the stomach at a normal rate. The intestines don't process the food normally. So it gets 'backed' up and we get reflux.

I suspect if you avoid your food sensitivies or allergy foods for now, eventually your intestines will heal and you will eventually be able to enjoy the foods that now seems to 'cause' reflux. Unless you have true allergies to those foods, you can eat those after your intestines recover.

BURDEE

[par18]

In another post, I reported that I had my endoscopy yesterday. I don't know the results, but I do know that my small intestines were red, inflammed, etc. I started my 100% gluten-free diet yesterday.

But, I was also diagnosed with a fairly serious case of GERD. I didn't realize that GERD could BE as serious as I was told mine is. I have scarring from years of acid issues, and my esophagus is narrowing (which has been the cause of my constant "whoops, swollowed that down the wrong pipe" issues. Not the "wrong pipe" --- narrowed pipe.

So, my GI put me on a strict diet to accomodate both the GERD issues as well as the gluten issues.

I swear, there's nothing left for me to eat.

I'm TRYING to go with the attitude that "fuel is food" and that's the ONLY reason one needs to eat. But, being SO restricted is really angering me.

However, my grandmother passed away after battling with larynx and esophageal cancer. Hers was due to years of refusal to quite smoking, despite the begs and pleads from her family. My esophageal issues can be controlled soley by diet. I can control this. But right now... I feel like it's controlling me.

All the "non-gluten" foods that I love have been stripped out of my diet. I can't eat tomatoes. That's one of my all time favorite foods. No ketchup.... I put ketchup on everything. And, no ketchup (or BBQ sauce) on meat will mean I don't eat meat. I can't have fresh fruits (mainly citrus and apples), chocolate (OMG!), and a whole host of other things.

I'm just SO frustrated. Please... I just need some words of empathy, understanding, and support.

For what it's worth. Last year right after my biopsy and Celiac Dx I started on the gluten-free diet. I also had some inflammation in my stomach and had eaten my share of Gaviscon over the years. I wish to tell you that after eliminating gluten and gluten only I have not had a single instance of reflux since starting the diet. I eat everything but gluten. I think it is possible that your gerd is only a temporary thing. When I used to eat pasta I would get indigestion almost immediately. I would swear it was the sauce but it was not. It was the noodles. Same thing with pizza. I eat mainstream pasta sauce with gluten-free pasta now and have no problems. All my GI problems in the past were realated to one food and one food only and that was gluten. I would stick to your diet in the beginning but I think you might try to add back some of those other non-gluten foods you like later and see what happens.

Tom

[happygirl]

you mentioned you are lactose intolerant---do you take lactaids?

xoxo

[tarnalberry]

You may find that you are able to adjust what you like and don't like. This won't be overnight, or in the next few weeks, but over a few years, but it may help you expand what you can eat. There are so many ways to cook (outside of spices and sauces) the same thing that you may be able to find something that you do like about some of the foods that are current "don't like so won't eat" list. (I saw this because of my husband, who is a *very* picky eater, has found that there are some foods that he has become willing to eat if they are prepared in certain ways.)

You'll pull through this, learning what you can and can't eat, and it may take a lot of time and heartache. I'm sorry you're going through this - no one deserves it, and it really really sucks. But I have confidence you can move on to a place where, even if it's not easy, it's easier than it is now.

[daffadilly]

Have Cheer, I do not think you will be on that GERD diet very long. One of the symptoms of celiac is GERD - Acid Reflux. My double DQ1 boss has acid reflux - still - because he refuses to think it is the gluten! ...

I predict that you will be GERD free in a matter of days, but stick with the safe diet for a bit, till you get a chance to heal.

I had to give up tomatoes one time - that was really hard to do.

Wishing you the best week ever...

[jayhawkmom]

Thank you, thank you, thank you!!!!

The support here is seriously enough to "turn that frown upside down."

I am so glad I can come here in the worse mood ever, and leave here feeling like I don't have things so bad off. I'm really hoping you are right about the GERD stuff!!

I take 30 mg Prevacid daily, but haven't taken anything for the lactose problem. I may invest in a bottle of lactaid for those situations, which will inevitibly arise, where I just can't avoid all dairy. Better to be safe, than sorry right?? And, the diary problems COULD potentially go away too, after being gluten-free for a while.... yes??? =)

[2wheels4eyes]

- I just got a rice cooker today and I made myself a big old crock of organic brown jasmine rice and steamed some carrots with a little soy margerine. It was really quite good! =)

I'm very recently diagnosed as celiac and know nothing about GERD--but I too bought a rice cooker as my "get well" gift to myself. And as a long-time vegetarian now finding myself having to eat a lot of fish and chicken (my only protein right now besides nuts) I can sympathize with the hating meat-with-no-ketchup thing. (I can eat ketchup, but sadly it doesn't help me like meat!)

My suggestion: The Ultimate Rice Cooker Cookbook (Open Original Shared Link .com/gp/product/1558322035/102-5691368-3916944?v=glance&n=283155).

Not explicitly for any type of restricted diet, but I've found it to be a huge source of ideas and easily-adaptable recipes. (And many recipes don't need any adapting to fit the diet!) I use my rice cooker one or twice a day now as a fancy slow cooker--breakfast porridges, for stews & soups, various rice dishes, etc. If your rice cooker has a timer, all the better--I throw stuff in the cooker and set the timer for breakfast etc., rinse it out, and throw more stuff in to be ready for dinner when I get home. A lot less frustrating to adhere to a diet when dinner's magically done right when you need it! I also find meat more palatable done in slow or rice cookers--you can flavour or spice it very mildly and everything loses that gross meat texture. Then I end up "hiding" the chicken or whatever in other things--quesadillas (no cheese or gluten of course!), shreedded in a rice salad, etc. My other suggestion--try lots of different types of rice. The short whole-bran rices are filling and really hold their own as stuffings, in salads, etc. I almost don't think of them as "rice" at all (which makes some psychological difference to me when faced with menu boredom.)

Hope this helps!

[Carriefaith]

Meat can still taste good without BBQ sauce. Try cooking or roasting meat in herbs, spices or mustard! Try this:

chicken cut in strips

1-2 cups of water

2 tablespoons oil

2 tablespoons mustard

1 tablespoon parsley

pepper

Cook chicken in water until done. Remove access water. Add other ingredients to chicken, mix and cook on medium heat for a few minutes.

steak

1-2 cups water

carrots, chopped

celery, chopped

1 teaspoon thyme

1 teaspoon parsley

1 teaspoon basil

dask garlic powder

dash pepper

1 clove garlic, minced

Just throw everything in a wok until the water evaporates.

Hard boiled eggs with pepper are really good!

[Mayflowers]

I swear, there's nothing left for me to eat.

I hear ya. I'm gluten intolerant, milk intolerant and I fear egg, soy and yeast intolerant. I'm waiting on results from Enterolab on those. Today I was eating cashews and I started itching all over. figures. I was thinking of becoming vegan but if I can't have soy, it would be extremely boring...

There's a lot of support on this board so welcome, even though I'm still having wheat and milk withdrawals. I've only been free since 8/15 completely.. I found extra stress B vitamins help with the withdrawals.

Good luck!

[daffadilly]

Jayhawkmom, yep do not worry about later, just take care of today...

re dairy, if you are dairy sensitive you are not supposed to have it period, do not take lactaid etc.

that is like eating gluten and taking antacids!!!!

Now that does not mean that you cannot ever have dairy again, you have about a 50% chance of that going away, but it is not going away if you cheat on it, & do not heal.

IMO dairy is harder to give up than gluten, but it is do-able & like gluten it takes about 3 weeks to "get over it".

Be sure & keep us posted on your recovery, I think that as the gluten gets out of your system you will feel better & better each day. I would also caution about adding other grains at this time, I think it is better to wait until you are healed to slowly add in that stuff. I learned the hard way that I cannot eat most of it. The first year I kept trying to eat the gluten-free bread & crackers & homemade treats & I never really got completely well until I just said to heck with it & gave it all up. Sometimes the reaction is very noticeable & other times you just cannot quite put your finger on it. But when you are healed you will have no symptoms & feel such a feeling of energy & well being from the core of you that you will know that you are well. Until then proceesd with caution. Also take a B12 everyday

I have two DQ1's and never had a huge about of gastro symptoms I had the big C instead of the big D. But it took right at two years to get to the point where I thought I felt completely "normal". Of course during that time I was also recouperating from a broken knee, expect to read about me in the medical journals next year as my orthopedic surgeon is going to write me & my gluten-free diet up if I still have no arthritis at the 2 year marker I have had to give up dairy (again) but am over it just about since I have spent 3 months trying to re-intro it into my diet & finally realized that it is not to be. I do not have time to worry about the dairy as I am shopping for a bicycle to start a old lady biking group in my area

[corinne]

It is tough, but it will get better.

I'm on a really strict diet for now - just meat, canned peaches+pears, avocados, bananas, beets, carrots and eggs. At first it was hard, but as I started to feel better, that was really motivating. I've learned to look through cookbooks (I borrow them from the library) for interesting combinations and that helps too.

You can probably make some good comfort food - maybe pudding made from coconut or rice milk, pork chops with apple. Finding a few things that satisfy cravings really help.

[penguin]

I don't have much to add food wise than other people have, but I can offer support! I was put on a GERD diet a few years ago when they thought I had GERD, and it did suck, but hey, it works. You do get used to not having those things, and I actually developed a fear of orange juice and tomatoes. Turns out that I don't have GERD and never did, but can tolerate those things gluten-free.

It is really hard at first, but it did a lot of good for me that has lasting effects:

-no more addiction to caffene

-less fried foods

-lost some weight

-now have knowledge of alternative ways of eating things

You'll feel better!