Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Having A Hard Time Coping


Diosa

Recommended Posts

Diosa Apprentice

Hi all.

I'm really having a hard time coping with being gluten-free. It's not so much the the actual diet as it is my lack of alternatives. It seems like most people can substitute rice flour or soy flour and have breads or pasta. Same with milk: replace with soy, rice or even almond/hazzelnut. What do you do when you're allergic to all those things. Im allergic to soy (get really bloated and feel harrible), rice reacts as bad as gluten in my body and nuts cause aphylactic (sp?) shock. I know I should think of it as a new way to eat, and just cut out the stuff, but I'm so used to breads/pastas/baked goods etc, that I don't know if I can.

Any advice?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

Here are some suggestions:

Enchiladas

Bean Flour Tortillas

These are great and can be frozen, I would suggest doubling it

1/3 cup light bean flour

1/2 cup cornstarch

2 tablespoons tapioca flour

1/2 teaspoon salt

2 eggs or 3 egg whites

1 1/2 cups water

oil for brushing the pan or skillet

Mix everything together and let it sit in the fridge for about 20 minutes. Heat a skillet or pan at medium-high heat and cook them like pancakes, just keep turing them to avoid buring. Store in wax paper in a plastic bag in the freezer or fridge.

Sauce

2 tablespoons chili powder

1 cup chicken broth or water

1 teaspoon garlic salt or to taste

1 1/2 tablespoons cornstarch

1 can tomato sauce

Just heat this all up in the microwave or the stove

Mix the sauce with your favorite filling. I buy mexican frozen veggies and thaw them in the microwave and mix it with the sauce. This could also be frozen. Very yummy!

I got this recipe idea from Tiffany (Tarnalberry) and it is very good:

-your favorite veggies (I use a bag of green giant mixed veggies, broccoli, cauliflower, and carrotes)

-1 teaspoon of each of the following:

rosemary, thyme, summer savory, oregano, sage

-1/2 cup of Kraft Balsamic Vinaigrette if this has soy try Tiffany's recipe

Balsamic Vinaigrette

1/4 cup balsamic vinegar (get the best stuff you can afford)

1/4 cup extra virgin olive oil

1 lemon

1 tsp rosemary

1/2 tsp basil

1/2 tsp oregano

1/2 tsp thyme

1/2 tsp ground mustard

1/4 tsp ground sage

1/4 tsp salt

2 cloves garlic

Combine vinegar, oil, oregano, thyme, mustard, sage, and salt in a container for salad dressing. Zest the lemon, and add zest to vinagrette. Juice the lemon, removing the seeds, and add 2 tbsp of the juice to the vinagrette. Crush the rosemary as much as possible and add it in. Crush the garlic and add it as well. Shake well to combine, and for best results, refrigerate overnight before serving. Note: Vinagrette will separate over time, and in the refrigerater, the oil may congeal. Simply let it come to room temperature and shake to combine.

Cook it all together until the veggies are done

chili

1 pound hamburger

2 cans of Heinz beans in tomato sauce

2 cans of Heniz chili style Kidney Beans

2 cans tomato sauce (or whatever you want as a base)

1 can of tomatoes

2-3 tablespoons of Mc Cormick Curry Powder

1 cup of corn

1 red pepper in small pieces

1 onion minced

optional (mushrooms, green pepper)

Cook the hambuger, onions, red pepper, mushrooms, and green pepper, in a frying pan/ skillet until the meat is done. Then throw everything into a big pot and cook for about 20 mintues - 30 mintues

Done!

plantime Contributor

Have some {{{hugs}}}!! I'm allergic to rice and tree nuts, and soy messes with my hormone levels! I use a flour blend of one cup each of garbanzo bean flour, potato flour, corn starch, and tapioca flour. I haven't found a decent bread yet, and I am not sure I ever will, so I just do without it.

frenchiemama Collaborator

Are you ok with dairy? I say this all the time, but the best gluten-free bread and baked goods I have found are from Grandma Ferdons (www.grandmaferdons.com). She uses corn and potato for almost everything. The egg bread is my favorite, but it does have milk.

Diosa Apprentice

Thanks guys!!

Having folks like you around is really making this more bearable. No one I know has this (or has even heard of it) so it's comforting to have folks round that really understand. My fiance Paul has been wonderful, even offering to go gluten-free with me, but he's been the only support I have besides this group.

Thanks again for putting a smile of my face. ;)

Merika Contributor

Hi,

Just hopping in to say you're not the only one :) i am celiac, my ds (age 3) eats gluten-free AND he's allergic to soy. Ridiculously allergic, none of the lecithin, vitamin E, etc. Soy is I think more pervasive than wheat in our country :blink: But we do it, everyday, follow the diet. Oh, and we're vegetarian (rolleyes...)

Merika

Guest nini

Have you tried Quinoa pasta? Quinoa is a great gluten free grain for those allergic to rice and soy. As far as dairy or soy replacements, sometimes it's best to go without. Might I suggest a diet consisting of "clean' organic meats, organic fruits and vegetables, spring water, and organic spices... you can create a virtual smorgasbord of delicious allergen free meals this way. I've actually gone to this more "pure" diet in the past few weeks after several allergic reactions to processed foods. (no cross contamination and positive they were gluten free)... I haven't given up dairy, but I'm sticking with organic minimally processed cheeses and organic milk.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest Zmom

My son is allergic to dairy,soy,citrus,peas,navy beans,almonds,chicken +(all poultry) and until two weeks ago rice gave him a tummyache although all allergy tests were neg. for rice. it was beef,green beans,broccoli, potatoes,gluten-free apple sauce,egg yolks for months.(+ liquid calcium/vitamins). lamb,chebe cinnamon sticks and a few other things have been added succesfully but it took time.

I was looking for an alternitive for milk for my self when I discovered that westsoy had comeout with a gluten-free rice milk. I let my son try a little. No tummyache. The next day I let him have some more. He has not had any problems with it. I then tried some delta brand jasmine rice.-overcooked it. No problems. Maybe you need time to heal. Some brands of rice may be packaged in non-gluten-free facilites.

www.chebe.com-yummy they use tapioca flour

tarnalberry Community Regular

You can get used to a new way of eating (the way you're eating now was once new to you), but it can be tough - mentally in particular. But with so many food intolerances, there isn't a big choice. Looking for some of the old favorites is fine (it looks like corn tortillas, for instance, should still be fine for you), and minor substitutions for some things (millet or quinoa for rice, for instance), and other specialty substitutions (like DariFree for milk - made from potaties, or corn pasta). But you've got to meet those substitutions half way with some new things to fill in the spaces that the things you can't replace leave behind. But that's what the cookbook section of your local library/book store is for! That, and your imagination. :-)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,977
    • Most Online (within 30 mins)
      7,748

    Redrayvyn
    Newest Member
    Redrayvyn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...