LarlaB Posted October 10, 2013 Share Posted October 10, 2013 I was diagnosed with Celiac disease about 4 weeks ago, and have been 100% gluten free since then. I wish I could say that my tummy has never been happier, but in fact I've never struggled more! I now think I have intolerance to peanuts & cashews....I get terrible stomach cramps, nausea, gas & burping and a few days of bloating and feeling off. I've NEVER had this reaction to anything- LOL Its quite remarkable and undeniable. I'm done w/ my testing- I can't take it anymore LOLI have been eating LCHF for 18 months and have relied heavily on nuts as a great low carb, high fat, protein source. I have NEVER had issues eating them before. I have read a few places that after going gluten free, some Celiac sufferers uncover additional food intolerances.... Has anyone heard this, or have any experience or insight? How does that even make sense? Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted October 10, 2013 Share Posted October 10, 2013 When i quit wheat and dairy i felt much better, but started noticing other problems. When i went through additional testing (both ALCAT and testing from an allergist), I ended up on a very limited diet - then I started noticing trouble with some herbal teas, some vitamins . . . it seemed to me that as my system calmed down I was able to see the milder reactions since it wasnt lost under the major issues. But did you add something else when you went gluten free thats new? Like a new grain or gums or something? I turned out having issues with tapioca, sorghum and xanthan . . . Quote Link to comment Share on other sites More sharing options...
NicAnn Posted October 10, 2013 Share Posted October 10, 2013 Look into gut healing and the GAPS diet. That explains, in a lot of cases, why people with Celiacs seem to have more pain or problems. I think it's really important not to look at Celiacs as a food allergy, but as a disease you need to heal from. Good luck! Quote Link to comment Share on other sites More sharing options...
tammieb Posted October 12, 2013 Share Posted October 12, 2013 www.saveyourguts.com Changed our lives & helped tremendously with dd's trigger for her autoimmune disorder -- gluten! Quote Link to comment Share on other sites More sharing options...
J-rap Posted October 12, 2013 Share Posted October 12, 2013 Dairy? Also, I get severe stomach cramps with apples/apple juice. One apple or one glass of juice is fine. Two apples or two glasses of juice has sent me to the hospital. Quote Link to comment Share on other sites More sharing options...
Soror Posted October 12, 2013 Share Posted October 12, 2013 Yes, and the number one thing I would be looking at is dairy, it is EXTREMELY common to lose the ability to digest dairy b/c the villi get destroyed. Quote Link to comment Share on other sites More sharing options...
Ellie Posted October 12, 2013 Share Posted October 12, 2013 My worst-case-scenario celiac friend has discovered that corn is bad for her, and that includes corn by-products such as corn starch and corn syrup. She already knew she was deathly allergic to all dairy products and tropical oils and fruits. Quote Link to comment Share on other sites More sharing options...
walkermamaof4 Posted October 15, 2013 Share Posted October 15, 2013 The autoimmune protocol diet seems really good for long-term healing. The book Gut and Psychological Syndrome is the most informative I've read on this topic. DS is sensitive to 12 things and I think others have surfaced as well but haven't figured out what they are. So, so sorry you are dealing with this. We understand! Paleo has been a good overall diet for us. I hope you find that you can eat some nuts. We finally did an IgG to pinpoint more quickly and accurately what the issues were. The Great Plains IgG is great and you can google it for more info. For dd, we could not figure it out on our own. Turned out it was sesame and also egg whites. For ds it is dairy, eggs, and tons more. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted October 15, 2013 Share Posted October 15, 2013 I felt HORRIBLE for the first 3 months after going gf. Granted, I was super sick before that because I didn't know I had celiac disease. I kept waiting to feel better "instantly" like I'd heard from others who had been diagnosed. Nope. I felt awful. Terrible stomach aches, bad headaches, constipation, and bloating continued for quite some time. In fact, I ended up losing 5 lbs in the first few months after diagnosis (I weighed 94 lbs at diagnosis and lost 5 more.) Doctor said my body was healing and until my intestines healed enough I would continue having a hard time eating/digesting. I had to stop dairy for about 6 months, but I can eat it now. I had to stop anything high fat. So no nuts, no avocados, no red meat, no bacon, limited eggs, no coconut, and other high fat foods. He explained that my pancreas was not functioning properly due to the inflammation and damage from celiac disease. It can take awhile for the pancreas to get back to normal. The pancreas helps break down fats which my body was not able to do (one of the signs that I had celiac). Neither intestines nor my pancreas could handle fats or dairy. It's been two years now and I can again eat dairy and fats. I could eat dairy long before I could eat high fat foods. I'd try a spoonful of nut or peanut butter every now and then and get horrid stomach pain. The same happened with avocados and I love those things. I was very sad. So you may just need time to completely heal your intestines and get back to normal pancreas enzyme productions levels. It may take longer than you think. Also, any accident with gluten consumption will set you back each time. I have to go back to avoiding dairy, nuts, avocados, etc. when I have an accidental exposure to gluten. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted October 15, 2013 Share Posted October 15, 2013 I think it's really important not to look at Celiacs as a food allergy, but as a disease you need to heal from. Good luck! I agree as celiac disease is not a food allergy. It is an autoimmune disorder. No one calls diabetes an allergy to sugar so I don't know why people think celiac is an allergy to gluten. Diabetics cannot process sugar; celiacs cannot process gluten. Both cause an autoimmune response that attacks and damages the body. I will go on to say that one does not heal from celiac as in "I'm all better now and celiac is gone." I'm not saying you, NicAnn, are implying this, but I've had others have that mentality. If I counted the times my mil has said, "Well, maybe when your body is stronger and all better then you can eat little bits of gluten." :glare: As if my inability to process gluten has to do with my body being weak. What does that even mean?! Again, do people say to a type 1 diabetic, "Well, maybe when you get stronger you'll be able to eat sugar without insulin meds?" Lara, I hope you start to feel better. Unfortunately, for me LCHF did *not* work for me the first year of my diagnosis. I'm LCHF now though. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted October 15, 2013 Share Posted October 15, 2013 FWIW, its not as simple as 'celiac vs allergy' either. I tested negative for celiac, but positive for allergy and sensitivity. My son tested negative for celiac, negative for wheat allergy, positive for sensitivity to gliadin - he used to have the runs twice every morning before the school bus came, and that stopped within a week of going gluten free. For me, I had tons and tons of allergies - allergist said I reacted to every single air-borne allergen he tested me for and 90% of the foods. I have a family history of immune disorders, and it really seems like, despite not having celiac, eating wheat/gluten all my life really messed with my system. The longer i've stayed away from them, the healthier I feel. I was dx'd as allergic to wheat and dairy as an infant and put back on them in about a year, because i stopped having the runs. Its complicated - i'm quite convinced its much more complicated than most of the experts want to admit. Maybe the majority of people simply have one or the other, but there are other options. Quote Link to comment Share on other sites More sharing options...
NicAnn Posted October 15, 2013 Share Posted October 15, 2013 Mom-ninja- I totally agree. I never thought to compare it to diabetes, but that's a great comparison. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted October 15, 2013 Share Posted October 15, 2013 I don't think I was denying that non-celiac gluten sensitivity exists. It most certainly does. If you go to the Chicago Celiac Center they have a section on non-celiac gluten sensitivity This is the main difference between gluten sensitivity and celiac (from the above site): "Unlike celiac disease however, it’s not restricted to people that are HLA-DQ2 and/or DQ8 (the genes that must be present for celiac disease to exist), and it might be transient. Also, there is no known association with autoimmune conditions, and it’s not known to be associated, if untreated, with long-term risk of malignancies." Gluten sensitivity can cause some of the same symptoms, but it will not cause internal tissue damage, it does not increase risk of other autoimmune disorders, and it does not increase risk of certain cancers. So be happy you have gluten sensitivity and not celiac. :hurray: I mean, not that getting sick from gluten is a good thing, but you can reassure yourself that you're not at risk for celiac specific risks like intestinal cancer or increased risk of type 1 diabetes, Hashimoto's, Crohn's, and so forth. One of my sons does have the celiac genes. He is at risk of developing celiac. He is gf at this time. My other ds does not have the celiac genes, but he does not feel well when he eats gluten. He cannot develop celiac but probably has non-celiac gluten sensitivity. For awhile we thought he was IgE allergic to wheat, but he's not. He's gluten sensitive. My other ds seems to not have any issues at this point. Funny how genetics works. Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted October 15, 2013 Share Posted October 15, 2013 But my sister is dying from some sort of never-diagnosed immune disorder. She never went off of gluten and I cant help but wonder if it could have helped. But she was never reasonable. Ever. About anything. My daughter is having similar symptoms to what my sister had at her age. So maybe the gluten sensitivity isnt related to other immune disorders, but that would just mean my family's genetics are really horrible. Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted October 15, 2013 Share Posted October 15, 2013 I think the diet itself requires way more than just skipping wheat, rye, barley and oats. I've helped a few people and I advise them to eat only whole foods type for the first few months. Plain meat, lightly seasoned plain veggies, . Don't do soy, don't have diary and avoid gluten free products to replace gluten products (your pastas, breads, cookies etc). Basically nothing processed. It helps the gut to heal faster and calm down and the liver and pancreas to heal and reduce the inflammation. You don't have to eat that way for eternity but just a few months. I also discovered through trail and error that it works better for some if you add in only one new thing at a time. So if you are dying for pancakes, Eat only that only once a day a couple of times a week. Slowly increase that food until you can have it every day or a couple of times a day without any adverse reactions. Then add in another new food. My daughter was so sick that we had a very limited diet for 2 months (when the diarrhea stopped and she had regular bowel movements) and then added in only one new food type each month. And then for awhile there we couldn't eat pancakes for breakfast, sandwich for lunch and floured fried type food for dinner. just way too many grains. It took well over a year before she was at a point where she could just anything in a day or a week and not have any adverse reactions. So many GI drs think the gut just magically heals because you removed the offending food. They don't always understand that similar foods will upset your intestines the same way, too much of a similar foods in a day can overload your system and a myriad of other little things. plus, while in theory, the gut heals rather quickly, reality is it doesn't. Sometimes it takes a while. Sometimes it needs way more babying than they like to admit. Sometimes you do discover new allergies, other times you are just in the healing stage and need to baby it. Much like a wound. It is still sensitive way after it looks healed. Any little thing can scrape it open again, agitate a spot or make it hurt. The gut is very similar in my eyes. ** just to clarify.... All of our food is gluten free. I didn't mean she could eat gluten. That even with gluten free, it was still hit and miss for many months until full healing took place but she still has to be gluten free. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 15, 2013 Share Posted October 15, 2013 My celiac sister has found that she does not tolerate any grains well. When she went to a diet composed of meat, vegetables, and fruits, she started feeling much better. It was a hard transition, because she already felt so deprived having to be gluten-free. However, the difference in her health is undeniable. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted October 16, 2013 Share Posted October 16, 2013 My celiac sister has found that she does not tolerate any grains well. When she went to a diet composed of meat, vegetables, and fruits, she started feeling much better. It was a hard transition, because she already felt so deprived having to be gluten-free. However, the difference in her health is undeniable. This is me. I feel much better with little grain in my diet. I can do grains, but I make sure I don't have them at every meal like a pp mentioned. However, if I feel like having gf pretzels then I'll have some. I just make sure I don't eat the whole bag. :lol: Quote Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted October 16, 2013 Share Posted October 16, 2013 I would try a paleo diet for a while. If that doesn't help then move to an auto-immune paleo diet. A good website is www.whole30.com There are several resources that suggest that simply being GF is not the answer for Celiacs. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted October 16, 2013 Share Posted October 16, 2013 Paleo won't work if she is having problems with nuts. So do nut free paleo. :D There's also a small chance of refactory celiac. I was afraid I had that. After a year, though, I knew I didn't. Just needed that year to fully heal. Quote Link to comment Share on other sites More sharing options...
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