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Does it get any easier?


1398-Days

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1398-Days Contributor

I've been gluten free since August and I feel like it's never going to get better. Once I got over the euphoria of not feeling sick every day I got hit HARD by reality. I can't eat 90% of what I used to, plus I'm much more sensitive that I originally thought. So I need to be very, very careful about cross contamination, which isn't easy when you live with people who eat gluten and aren't all that concerned about CC. I'm sure I've been getting glutened by the cookware since I seem to feel sick every night after dinner (i don't really cook for breakfast or lunch.. usually just something quick). So I guess that's partly why I've been so down lately. I just feel so hopeless sometimes because I've given up so much and it seems like it will never get any easier. And just when it seems like it might, something happens to bring it all crashing down again. I've lost 25 pounds in the past few months just because I barely eat! I want to feel like a normal person again.. Please tell me this gets easier :unsure:


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LookingforAnswers15 Enthusiast

Hi, it does get easier. I used to love trying different cuisines and had a lot of things I loved that I cannot eat now. What helped me was not even concentrating on what I can't eat but figuring out new things I can eat. I honestly do not even think about my favorite dishes that i can no longer eat. I am also the only one who is gluten-free free in my family and to avoid cc, I have a few things that I only use, a couple of  pots and pens, utensils, cutting board and cleaning sponge to avoid cc. I prepare 99% of my food. I am not saying it is easy and i wish there were days i can just grab something on the go when i am too busy to cook and hungry at that moment but I always replace it with fruits until I fix something that I can eat. I would rather be hungry than get sick. I also had to get rid of some other things such as sugar, soy, dairy, corn, nightshades (white potatoes, eggplants, tomatoes, and peppers). Since you say you are very sensitive, pay attention and see if you react to some other things. Even if you are unable to consume these now, you might be able to add them to your diet later on after your body heals. We all went through and are going through this so we understand. It is not easy but with time we learn how to cope with it. I think you are in a difficult period after going gluten-free but you will get out of it. I felt fine after going gluten-free and then a few months later realized I was not feeling well because of these other ingredients. I am almost 2 years gluten-free and I have never cheated and have avoided cc to my best abilities but my antibodies are still far from normal since they were super high when diagnosed. So, it takes time but I am hopeful because with every check up, they come down. Good luck. Do not lose hope!

Pauliewog Contributor

It is important that you have your own cookware: pans, cutting board, knives, etc. My husband eats gluten but he has his set and I have mine! I have to keep an eye on him because he gets careless sometimes but I have never been sick from CC in my house. Yes, you have to be careful.

It's really important to eat healthy food to heal. It's a pain, but that means cooking all your food. Forget about anything in a bag/box. I found that experimenting with sauces helped to jazz up food. My favorite simple one is just honey and yellow mustard mixed together. Goes great on fish, chicken, veggies. Once I stopped thinking about what/how I used to eat and just started thinking new it did get easier.

Also, when I first started out 4 years ago, someone recommended checking out the Paleo blogs (mark's daily apple among others). Paleo people eat gluten free mostly but are so gung ho and excited about food. I found it very uplifting. Tons of amazing recipes out there.

Karen B. Explorer

I've been eating gluten free since 2003 and it does get better.  I do remember when Hubby and I realized that I was getting sick every time I ate something cooked in a cast iron skillet and we had to burn it out and re-season it. It's incredible how sensitive it can be.  After all this time, I still get hit with the strong wish for the convenience of being able to pick up a bucket of chicken for supper when we're tired although I stand by what I told my doc about the GFD... "I can't say it's not better for me to have to think about everything that I eat.

 

I can't imagine living in a house with gluten.  My hubby made the decision to have a gluten-free house when I was diagnosed when he realized that him kissing me when he had been eating gluten could make me sick.  I didn't believe it until he proved it to me.  If you have to share a kitchen with gluten, you need people that respect territorial boundaries. If you don't have that, you're going to keep getting sick.

Gemini Experienced
7 hours ago, Karen B. said:

I've been eating gluten free since 2003 and it does get better.  I do remember when Hubby and I realized that I was getting sick every time I ate something cooked in a cast iron skillet and we had to burn it out and re-season it. It's incredible how sensitive it can be.  After all this time, I still get hit with the strong wish for the convenience of being able to pick up a bucket of chicken for supper when we're tired although I stand by what I told my doc about the GFD... "I can't say it's not better for me to have to think about everything that I eat.

 

 

Getting sick from sharing a cast iron skillet has nothing to do with being sensitive......that's a no-no for anyone diagnosed with Celiac. You do not clean a cast iron skillet the same way you clean a stainless steel pan so there very well could be contamination left on the surface.  The only cast iron that is safe for a mixed household would be enameled cast iron.

To the OP......of course it gets better!  Anything new that requires learning and time is challenging but you will become adept at it and it will become second nature to you.  I have been gluten-free since 2005 and I cannot remember eating any other way.  If you had to give up 90% of what you normally eat to do the gluten-free diet correctly, then maybe you weren't eating very healthy to begin with.  I will say that being forced to eat healthier makes a huge difference as you age and keeps many of the medical problems facing people today at bay. The worst I can say for this lifestyle is that, at times, it is not convenient but if that's the worst thing I can think of, I'm not doing too badly.  Hang in there and start exploring all the food you can eat.  It is a lot easier to be gluten-free today than it was even 10 years ago!

deb-rn Contributor

My husband went gluten free with me.  I would say we  CAN  eat 90% of what we used to eat, but then we have a garden and rarely went out to eat anyway.  Looking at the Paleo posts helped me too.  I have recipies that are as good or better than before!  Almost anything can be duplicated.  Google is your friend!  We just take our own salads when going to someone else's house.  We make them aware of our limitations and tell them we will bring our own food for safety.  Not eating donuts at work is a blessing, not a curse!  Keep some soup in the cupboard for quick food.  Individually wrapped fish in the freezer is a time saver too.  Nut butters and gluten-free crackers are good to keep handy as well.

By the way, after going Gluten Free... husband realized his severe IBS of 65 yrs all but disappeared!  He's now lactose and soy free as well.  It's all good.  Do your homework before going out to eat to find out which restaurants have what you can eat.  Travelling is the biggest hassel.  We usually travel by car and take much of our own food with us to visit relatives.  I offer to cook so I can control what is going in the food.

Keep at it, it gets easier!

Debbie

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    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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