Just Diagnosed--Questions

[StClair]

Hello, glad to have found this forum. I was diagnosed day before yesterday, after two months of gastritis/esophagitis, not responsive to ppis. I have had bloating since I was a young adult (62 now), also migraines and some degree of fatigue and anxiety.

I had an upper endoscopy with biopsies of stomach and throat, but no small intestine celiac biopsy was done (my internal medicine doctor was furious), so I had the genetic testing, which came out 7 out of 8. The antibody blood test was inconclusive due to the strict anti-acid reflux diet (oatmeal replaced bread) I had been on for weeks.

Now I am on both an acid-reflux and a celiac diet. To be honest, I'm afraid to eat anything but vegetables, apples, melons and chicken/turkey breast. A lot of the gluten free breads, etc, are made with sugar, which I can't digest. I would like to eat brown rice and beans. Do you think this is advisable? I read about so many foods being suspect, but at the end of the day you have to eat something...

Another question for the experienced. I've discovered this disease after it has been unchecked for 62 years, and I am afraid that I have cancer or one of the other fearful complications. Is this a reasonable fear, or should I put it aside as best I can for now? I've only been on a gluten free diet for three days, so I know not to expect dramatic improvement yet (the bloating was actually somewhat better on day two), but I still have something more than fatigue. It feels like my arms and leg are "sick," if that makes any sense, and I have no vitality and just plod through the day, in addition to the (admittedly improved) gastritis/esophagitis. This was not me two months ago. I also have some odd cognitive things, short-term memory worse, and strange mistakes with words, speaking and writing. Could this be from the fentanyl/versed during the endoscopy?

Sorry for rambling! The details are a bit overwhelming at the moment. Thanks so much for any answers and perspective.

[Stone Soup Girl]

Put the fears aside for now and focus on what you can eat.

Make a list of all the foods you can eat and put it on your fridge, leave room at add to the list you will be surprised at all the foods you can eat.

I've been gluten free for 22 yrs before there was specialty breads and processed gluten-free foods.  I learned to keep it simple. 

 

I don't know what  restrictions you for  the acid reflux so it is hard for me to give advice.

Beans to me are gassy and would only do a small amount.

 

I kept shrimp in the freezer for the occasional pity party.

 

let me know what your acid reflux restrictions and I'll see if I can help you with the list of foods you can have and recipes that don't need special ingredients to enjoy.

 

Keep the faith it does get easier, Barbara

[squirmingitch]

It sounds like you are going through gluten withdrawal. It's real & it happens to lots of us but not all of us. Be warned you might get ravenously hungry & be that way every second of the day for a bit. You need to have protein & some good fat at every meal especially in the mornings.

 

Let's make sure you know what you need to know about being gluten free & that is not just eating gluten free but making sure you don't get cross contaminated. Read this thread in it's entirety & read the links too. It will give you a wealth of information.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

As to brown rice & beans they are fine for celiacs but if you're asking re: the acid reflux then someone else will be better qualified to answer you on that than me.

 

Just put the cancer fear aside. If you got it , you got it and if you don't then you don't. You don't need to stress yourself worrying about something that hasn't happened yet. Don't borrow trouble -- if only I could get my hubs to understand that LOL! The increased risk of cancer goes away with eating gluten free after a while.

 

The first 6 months to a year can be sort of a roller coaster ride. some days you feel much improvement & some days you might even feel worse than before you began the diet. Your body is going through major upheaval & trying to heal so try to be patient.

[StClair]

Thank you so much for your generous advice! It makes me feel less alone. I know I must have inherited this from someone, but I have no idea who, and all but one of the older generation is gone now. There are quite a few people I know that are sensitive to gluten to some degree, but from what I gather celiac is a whole different story. It seems to me they should be tested to be on the safe side. These last few days tell me that much time and attention is needed to be safe. I do hope the day will come before too long when I can think about something other than what I am eating.

Yes, I am hungry all the time. For the acid reflux, I follow the Koufman diet (now without the gluten, ha, ha), which is very bland, heavy on the rice and bananas, etc, safe for celiac. Interestingly, that problem has improved noticeably in the last three days since I've been gluten-free. I can't be tested for h pylori for another month, as I am just now off omeprazole, but I am taking Mastic Gum and Manuka Honey (good results in some NIH studies on these) in the hopes that my test will be negative and I won't have to take the intense antibiotic therapy on my newly gluten-free system.

So do you just have to experiment with trial and error with the other food intolerances? I have known for some time that I was unable to handle sugar, especially in the presence of wheat (ie the evil cupcake). I thought I could eat wheat as long as it wasn't with sugar...so wrong! I speculate that when my villi have recovered I may be able to eat some sugar, dairy. Is it safe to make a little trial from time to time to see it can can be tolerated?

Once again, thank you for listening and for your wise remarks!

[Stone Soup Girl]

Most grocery stores carry Tinkyada Brand Pasta which is a Brown Rice pasta, it's my favorite pasta. Earth Balance brand margarine should also be safe for you.

Rosemary is great for seasoning chicken and fish with a little olive oil than bake, grill or sauté it.

There were a lot of foods that gave me a sick stomach but once I started to heal I was able to add them back to my diet. I would do little trials since it was just an upset stomach as long as it isn't going to cause you any health complications.

My daughter was vegan along with gluten free if there are any converts you need help with let me know.

We love this Peach Cobbler Cake

Peach Cobbler Cake

Serving Size : 9

3/4 cup brown rice flour

1/4 cup tapioca flour

2 tsp baking powder

1/2 tsp cinnamon

1/2 tsp nutmeg

1/2 cup sugar or honey

2/3 cup soy milk

1/4 tsp almond extract

1 16-ounce can sliced peaches — well drained & cut into 1/2″ pieces

Preheat the oven to 350°.

In a medium bowl combine the flour, baking powder, cinnamon, nutmeg and sugar. Stir together well.

Add soy milk and almond extract and stir just until blended. Gently stir in the well-drained and chopped peaches.

Pour the batter into an 8″ square baking pan coated with nonstick spray. Bake at 350° for 35-40 minutes, until a toothpick inserted in the center comes out clean. Cut into 9 squares to serve.

Yield: 9 servings Serving size: 1 piece

I have used all brown rice flour it still taste good it's just a little more crumbly.

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[nvsmom]

Welcome to the board. 

 

Withdrawal definately could be a factor for you.  I experienced it too, and I still remember the extreme fatigue, grumpiness and headaches of those first couple of weeks.  Hang in there and it will pass.

 

I remember being quite hungry for the first few months too.  I ate a fair bit of gluten-free treats (so I wouldn't feel deprived maybe).Happily, I actually lost weight during that time.  LOL

 

Just hang in there.  You already know that healing will take a good hunk of time so you are ahead of most.  I imagine you'll be feeling a fair bit better by October, and better by next spring.

 

Best wishes. 

[squirmingitch]

Yes, eventually you should be able to add sugar back in. You may find yourself having new food intolerances so be on the lookout for that. Your acid reflux may go away all by itself just being gluten-free. You can test different foods -- just do one at the time. Keep a food log & that way you can track what's upsetting you.

Learning to eat gluten-free is a monumentally steep learning curve. This is also one reason it's good to just eat whole foods for 3 to 6 months. That will keep you from making mistakes & it's also the best thing to help your gut heal -- in the meantime you will be getting comfortable with learning the things you will need to do for the rest of your life. Try, try, try not to stress. I found it worked very well for myself & my dh not to try to replace "breads" or bakery items at first -- it keeps you away from processed foods and your disappointment in gluten-free bread/bakery goods. 

[StClair]

Thank you so much. It is super kind of you to post that comforting peach cobbler cake recipe. And hearing about how others have had the deep fatigue and ups and downs is reassuring. I am so glad you are all feeling better!

I do have one more question, if that's OK. Are food intolerances damaging to the already celiac damaged intestine? I agree that it seems simpler and safer to stay with whole foods for now, but, for example, the beans I ate today are causing the all-too-familiar gas. Is this harmful to the healing pprocess, or just the usual nuisance? I'm also concerned that the Manuka honey I am taking for the potential h pylori may also be causing gas from the fructose. In other words, is it advisable to eliminate all foods that cause an intolerance like gas?

I hope one day I will be expert enough to help others as you are helping me!

[notme]

if your beans are gluten free, you aren't causing any damage, but, if you have gone a very long time undiagnosed (as were many of us) you may want to lay off the foods that are hard to digest or make you uncomfortable.  what you are describing is probably withdrawal (when you said sick arms i went 'oh, yeah, i remember that'  lolz) it feels kind of like the flu, but not.  i was super cranky, tired and ache-y.  if you have the luxury to do so, treat it as an illness and rest up until you feel better <and you will.  i think i was sick with it for about 2 weeks.  not super sick, just tired and icky.  drink lots of water.  keep a food journal with everything you eat in relation with how it makes you feel.  if you have trouble digesting a certain food right now, skip it and only eat what doesn't bother you (or gives you the least amount of difficulty) you can add things back in as you heal  no sense in irritating your intestines, be nice to them.  in the beginning, i was eating anything i felt like so long as it was gluten free.  then when it made me sick, i was all like:  THERE MUST HAVE BEEN GLUTEN IN THAT.  nope.  my guts just weren't ready to eat that just yet.  i am 4 years in and just getting back many raw veggies (my solution in the beginning was just to eat salads, which i love)  i could not digest many raw leafy greens or vegetables that weren't cooked.  cooked to death, lolz, truth be told!  but as i healed, i could tolerate more and more 'no-no' foods.

 

hang in there, each day will be better  welcome to the forum

[notme]

o, and the cancer or whatever you are worried with:  your immune system has been limping along until now.  you are essentially rebooting it with an upgrade to be super immune system.  whatever cancer you don't have now has an enemy to fight it:  your autoimmune system.  mine works like a champ, now.  i used to catch everything and anything that came around.  i had pneumonia at least once a year.  with all the kids in the winter, i spent at least a month cumulatively being ill.  i was the poster child for super antibiotics.   the last 4 years?  nothing.  not even a sniffle.  even my asthma went away  (W00T!)

[StClair]

I can't tell you how glad I am to read these responses. Thank you! I feel like my diet is especially complicated because I am not only gluten-free, I am also on an anti-acid reflux diet AND eating around the intolerances I've developed. Today I went crazy and ate full-fat cottage cheese with only minor reflux, so I'm starting to feel a bit better? We'll see later on how successful it was ultimately, ha, ha.

I have gone undiagnosed for a long, long, time, probably a record, and since I remember having symptoms as a child (not nearly as severe as the present onslaught) I'm kind of wondering what life would have been like had I only known. Well, may as well look forward now!

I feel so sorry for all of the people around who are undiagnosed and suffering and accumulating damage. Thank god it's reversible when you know. We are SO much luckier than many, in that we have control.

Thanks again.