Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

About Woolygimp

  • Rank
    Star Contributor

Recent Profile Visitors

4,683 profile views

  1. I've read that celiac covers all grains and the gluten diagnosis has been a mistake. Remember that quinoa and buckwheat aren't grains.

    BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

    I've started eating grain free because I have Sjogrens (an autoimmune condition) and celiac disease. After over two years on a gluten free diet I wasn't getting better...

    Eating grain/dairy free has really been a big improvement for me, I feel like I have a lot more energy, my Sjogrens has died down a lot, and I feel much less inflamed.

  2. HFCS.. evil on so many levels.

    Pretty outrageous bill there as well. Covered? Question it all anyway. All the more reason to question what was on that bull.. er, I mean .. bill.

    I didn't have insurance at the time and was around 20 years old and remember thinking that they'd have to take me to court to get that money. I'd have paid something reasonable- and maybe $500 or so without much fuss, but not 8k. Not for a medication refill. The only bill I've torn up and refused to pay.

  3. Well I'm feeling great. I don't remember my thought clarity being this good, or having this amount of energy...ever. I went from barely being able to walk from one side of my house to another, struggling to lift my arms, swollen facial skin, asthma, and just generally extremely poor health and now I feel awesome, and the only thing I changed was my diet. Today I started running again... something I haven't managed to do in nearly 8 years. I have diagnosed Sjogrens, along with Celiac disease, and my salivary function/skin/eyes felt great and were very watery, something I can't ever remember them doing. Normally I'm use to dealing with the excruciatingly dry mouth but it's been gone.

    Definitely holding my breath and hoping the improvements remain.

    Was gluten free for years. Didn't help.

    Cut out dairy a few weeks ago, improved a lot... but relapsed immediately if I had any whatsoever.

    Stopped all grains and improved again but I'd have bad days and good days and was generally inconsistent.

    Took a few days of a food diary to find out what was causing the inconsistency and still causing me to feel poor. High Fructose Corn Syrup.

    Apparently I'm allergic to it, along with just a couple dozen other foods, including all grains. I assumed that it was like distilled vinegar and "safe" and never really even considered that there was a possibility that I was reacting to it. I knew it was main from corn, obviously, but I didn't think that there were any residual traces of corn in it, or not enough to cause me to react.

    But I was reacting to it.

    It's even innocuous because a LOT of fruit beverages, especially fruit punches and even orange juice have the stuff added to them so you have to be pretty diligent with identifying it.

    I have grown to absolutely loathe this country [America] and our government because of things like this. HFCS is in every food/beverage that we consume because of our unnecessary subsidies of corn and other grain crops. Beverages most other places in the world are still flavored by sugar, which while unhealthy is at least known to be safe. But NO not in America, we're going to flavor everything with corn... which is not only a low quality sweetener and tastes terrible, but is much more dangerous for you, especially those with allergies to corn, than the alternatives.

    And to heck with doctors too. I was sick for eight years and they had no solutions to any of my problems. Every visit, every medication was a massive waste of time and money. Sorry, I had to rant... I'm just very upset the last 8 years of my life from 17-25, my best years, were wasted because our government doesn't give a damn about the health of its citizens. We can't even get proper gluten free labeling laws passed.

    I'm not one for conspiracy theories but there's no way that nobody in a position of power, authority, or in a medical field knew about what food could do to you if you develop antibodies to it. They've been herp-derp about gluten sensitivity/celiac disease for over 80 years without ANY progress, even though it's been linked to every autoimmune disease imaginable and is probably one of the most common ailments in Americans. But no, banning stem cell research and online poker are more important.

    I stopped by a local hospital to get a quick refill for a medication, sat in the waiting room from 11pm to 2am, then spent another 45 minutes in the doctor's office waiting. He walks in and says, "refill huh?" I said, "yeah" and it took him 15 seconds to scribble the Rx out and then he says, "have a good night" and walks out. I got billed for $8,500.

    Sometimes I feel like we're still in the bloody stone age.

    /rant off and sorry for the language.

  4. Skittles says they are gluten-free on the package.

    No, they aren't the healthiest choice, but they should be safe in terms of gluten.

    They should be safe, unfortunately it's not just gluten that give most of us problems. I thought it was for me and wasted 2+ years doing a gluten-free diet by the book without improvement. Corn & Dairy were big offenders that I always thought were safe.

  5. If it makes you feel better, I was skinny my entire life. When Celiac disease "started" around when I was 17 I literally jumped up from a lean 140-145lbs to 190lbs in a month. Keep in mind that I had NEVER weighed over 150lbs before that point. So I gained massive amounts of weight, at least for my size, when I got "sick".

    Everyone around me thought I was taking something, I'm sure because I had completely changed within a month.

    All the information outdated and erroneous information that says "gluten allergy", which causes celiac disease, only causes weight loss and malnutrition is exactly that. Bulls$#&. Celiac causes weight gain in many; for instance when the antibodies form many develop thyroid/pituitary disease and that alone can cause massive weight gain. It's literally one of the most common and understudied diseases, and now it's starting to come to the light that this may be the basis for all autoimmune diseases.

    Anyway, I caught mine too late and I developed Sjogren's so a diagnosis is important. Find a better doctor and then there's still Enterolab, which was held in very high regard around here and I'm sure still is?, that does DNA testing and is very accurate run by Dr. Kenneth Fine. They check your stool for antibodies, which supposedly is a lot more accurate than blood tests, and also for DNA sequencing that indicates whether you have the gene. I had both genes.

    I'd also stop with milk. I'm telling you, I love milk and I ate a "just gluten free diet" for a long time and the milk was DEFINITELY preventing me from being healed/causing additional damage. My casein antibodies were 3x higher than my antibodies to gluten, for instance.

    I'm back down to 175lbs right now but I'm going grain/dairy free to see how things go.

  6. I know people who no longer are insulin dependant after going on the paleolithic diet. I personally had RA and it is almost all gone. I have regained all of my flexibility. I think I personally had Sjogren's, because I couldn't really even spit, without it sticking to my lips. Now my saliva is much more liquid and I can actually drool again, like normal people can drool. Also, my nose runs like normal again, where before it never ran.

    When I first started the diet, after a few days of eating nothing but beef... I had felt better than I ever had. I felt like I could run 10 miles, my awareness was through the roof, and for the time in seven years I felt amazing. I didn't have any muscle pains, exactly the opposite, and I don't ever recall having THAT much energy. It felt great.

    Then things have gone down hill. First I ate some nuts and that was the last day I felt good. Then I ate some dairy a few days later, a few pieces of cheese etc. and blah.

    I haven't felt that good in 24 years so something did it. I only hope it's a lasting change once I get things sorted.

  7. http://www.umm.edu/news/releases/zonulin.htm

    "Dr. Fasano adds that more research is needed. He is currently conducting experiments with diabetic rats. Preliminary results from his experiments show that insulin dependent diabetes occurs in lab rats about three to four weeks after increased intestinal permeability. The researchers believe the increased intestinal permeability is associated with increased levels of zonulin."

    I personally believe the increased intestinal permeability is caused by candida and not caused by increased levels of zonulin. http://www.livinlowcarbdiscussion.com/showthread.php?tid=3523&pid=81082#pid81082




    Probiotics and a low carb diet starves candida and prevents regrowth, so permeability will decrease after the holes from the dead roots close back up.

    If autoimmunity is caused by increased permeability, which I'm almost positive it is, then have you seen people with RA/Sjogren's/autoimmunity improve w/ this restrictive diet?

    Both me and my sister developed autoimmunity and massive allergic problems to food I've NEVER had problems with in succession to Celiac disease. Our intestines were wrecked and it didn't take long for me to develop Sjogren's and her to develop Rheumatoid Arthritis. Almost positive both were caused by undiagnosed celiac disease.

  8. Sorry to hear that. I have Fibromyalgia so I know what it is like to be in pain all the time. Just got over another flare and honestly don't know what triggered it. I do know I have to be careful not to overdo things. Perhaps that is what I did. It doesn't seem to take much.

    I just don't understand why I'm the only person here that reacts this way to food?

    It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know.

    That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?

  9. I've been gluten free for over two years. All my gastroinestinal symptoms resolve immediately after going gluten free, and return (along with DH) everytime I'm glutened. I know when I'm glutened and these reactions that I have to these foods are definitely not the same reactions that I get when I'm glutened.

    A reaction to gluten can take 3-14 days to resolve, sometimes longer for the DH to disappear.

    The reactions I have to these foods last about 6-24 hours, maybe a tad longer, but instead of having any gastroinestinal issues, as I would with gluten, I instead get MASSIVE fatigue, inability to think, crushing weakness, and literally it feels like the blood is draining out of my body.

  10. It took me nearly 15 minutes to get off the floor to type this out. Everything I touch, eat, drink makes me sicker and sicker. I can go from feeling fine and energetic when I don't eat to literally crying in pain, unable to walk, collapsing on the floor because my muscles ache so much, everything feels massively inflammed, muscle weakness so bad that I can barely lift my arm.

    Every diet recommends Fish, Eggs, or all this other food that I can't tolerate. I'm pretty sure it was less than 3 fish oil capsules that did this to me.

    These extra foods aren't intolerances because I don't get any gastroinestinal symptoms from anything but gluten. I don't think they are allergies because I've never seen "massive inflammation, muscle weakness, fatigue" to the point where it's crippling as a symptom of a food allergy listed anywhere.

    I'm having a hard time finishing any of the diets when most of these "recommended" foods make me feel like I'm dying. Fish. Eggs. Nuts. Avacados. Grapes. Then there's grains and dairy, which I KNOW I react to because I have gastroinestinal symptoms and confirmed celiac etc. but even though they make me feel bad, they don't make me feel NEARLY as fatigued/poorly as fish, eggs, nuts and the other foods do.

    Except it's not just food but it's medication too. I'm only 25 and I have celiac disease, sjogrens, chronic prostatitis (probably inflammation related), low testosterone (I get test flu after every injection from the benzyl alcohol?, I can't even take hydrocortisone without it making me pass out for hours. It's made me discontinue every medication except the testosterone. I couldn't even tolerate androgel.

    EVERYTHING I touch makes me feel run down. Literally, the only thing that I feel comfortable eating is chicken and olive oil.

    Fish is the worst for me, and it's a staple food where I'm from. I grew up on seafood and now literally any bit of it will make me feel like I've lost a ton of blood pressure, and literally make me sit in bed for days unable to move - almost in a dream like state. When I'm like that, it literally feels like it takes more energy and willpower to pick up my arm than it does to benchpress 100 lbs on a good day. Literally, picking up my arm when I feel like that feels like they have 50lb weights attached to them.

    My life has been in a see-saw. I'll feel bad, then some days REALLY bad, then some days AMAZINGLY good. Albeit the bad days are far, far more common the good ones. But I don't know. I'm lost... maybe I'd be better off if I let the Dr. put me on a ton of prednisone.

    I'm losing faith fast and I need some encouragement and I'm finding it increasingly difficult to follow a restrictive diet when most days I can barely get out of bed and most of the recommended foods cause me to feel worse than when I've been glutened... Sorry for the rant, I just really needed to vent.

    Friends and family members aren't really willing to help because I put on a good enough "show" that they think I'm healthy, especially since I usually only leave my house on the days I feel well.

  11. I have Sjogren's also and it's pretty severe. I have noticed some improvement with it since the gluten-free diet but still have dry mouth and eyes, to some extent. It's a lot better than it was but still annoying and requires diligence in making it more comfortable.

    I am not interested in trying a grain free diet because I have no other problems with eating grains, as far as my gut is concerned and feel they are an important part of my diet. They are mainly whole grain in nature and contain nutirents which are vital. Since my Sjogren's IS better than it was years ago, I can live with the way it is now, even though it requires many dental visits to keep things under control.

    Sjogen's is a real jerk at times but I doubt it will ever go away completely so just deal wth it.

    I was never officially diagnosed with Sjogren's. The symptoms seem to come and go; before my diagnosis my mouth/eyes and such were extremely dry, but as of now when I'm typing this my eyes feel fine, my mouth has plenty of saliva in it (not as much as other people), enough to where I could drool/spit if I felt so inclined. However, the worst is in the mornings.

    I'm pretty sure it's Sjogrens but I don't think I have it AS bad as others; that or something is helping.

  12. I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

    It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

    Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

  13. I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

    For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

    Chatycady, how long were you on the SCD before you started noticing an improvement in dryness?

    And did you follow the SCD to the letter, or were there additional foods that you left out and additional foods that you included? For instance, I know for a fact that I can't have any milk based probiotics or even the home made yoghurt as I reacted to it.

  14. I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

    For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

    I have no problem eliminating grains, but on the SCD it asks you to eliminate all sugars which is much, much more difficult to do.

  15. I believe you are on to something!!! My whole theory (scientific or not) is to eliminate foods that cause a immune reaction. In turn the healing of the intestine begins and hence the immune system is strengthened and attacks the "correct" invaders.

    For me it is working. I know what foods are problems and avoid them altogether. It takes time and energy to figure out which foods are okay and which are triggers, but it is worth it!

    I'll be resuming SCD diet. I've noticed that I feel terribly fatigued after eating any type of grains, especially rice.

    I also wanted to add that I started taking a medication called LDN (low-dose Naltrexone) and I feel MUCH better. There's a ton of literature out there but it has been shown to help people with all forms of autoimmune diseases by adjusting the T-cells. It has also helped people with Celiac disease. The dryness has definitely abated a good amount since I started this therapy.

    Here's the Wiki:


    Here's a good source of information.


  16. It's an unfortunate fact that many people with Celiac also suffer from a laundry list of possible concurrent autoimmune diseases. I discovered my celiac disease too late, and i developed one or more of these autoimmune problems and they haven't fully responded to the gluten-free diet although other symptoms have.

    At this point, I've finally accepted the fact that I probably have Sjogren's disease due to suffering from a dry mouth, dry eyes, and dry skin for almost five years now. It has improved and I do get some saliva/tears now, but it hasn't full returned and it becomes absolutely horrible if I get glutened. I'm still suffering from DH to an extent, even though I've been gluten free for almost two years now. And both me and my endocrinologist think the Celiac disease has caused an autimmune disruption on my endocrine glands as I have very low aldosterone, cortisol, thyroid hormones, and testoerone, and I'm currently on replacement for those.

    There's no cure for Sjogren's but it's ruining my life. I've read that some people have responded well to the SCD diet, and even having some celiac-related autoimmune problems go into remission, but I have never read anything about Sjogren's being helped by SCD. Sjogren's itself is pretty common with us; some studies show that it's as high as 30% with people with Celiac, so there's a good chance that it's onset is induced by our reaction to gluten; but why doesn't it always improve when we stop eating gluten?

    Is there ANYONE out there that has an autoimmune disease improve while following an elimination diet beyond the conventional Gluten-free Casein-free diet? Anyone following the SCD diet who thinks they may have had Sjogren's with improving symptoms?

    I would be far more motivated to begin the diet and "tough it out" if there was any realistic possibility that it could improve my symptoms.

    I don't have Crohn's or any intestinal related dysfunction anymore since I stopped eating gluten. Diarrhea, weight gain, etc. have all subsided so if I could just reign in the autoimmune problem? I mean technically, it's "possible" that a bacterial overgrowth causing toxins to leak into the blood stream is acting as a cataclysm for the autoimmune attacks, but I don't know. Read some Sjogren's forums and there's almost no mention of elimination diets, and the disease itself doesn't even respond to other conventional therapies that other AI diseases do, such as prednisone.

  17. About the whole dehydration thing, it's actually my worst symptom and I can guarantee you that it's worth with me than most of you. I'm currently on fludrocortisone because I can eat all the salt in the world and without the fludrocortisone, my body does not hold on to either liquids or salt.

    Without the fludrocortisone, I get horribly dry skin/mouth/eyes and polyuria... the fludrocortisone has been nothing short of a saving grace for me.

    So now I take 0.1 twice daily and eat a lot of salt and stay hydrated and for the most part my symptoms are going away as long as I watch what I eat. If I get glutened/caseined then the fludrocortisone seems to lose it's effect and the symptoms come back. For the most part, my skin feels very good again, mouth/eyes water if I'm doing good.

    Not much room for error though!

  18. Thanks for posting Jan.

    I don't know if the SCD is for me or not as my results have been tainted, twice, by the yogurt. So I'm giving it a third-go. It's just that all of my intestinal symptoms, stomach pains, diarrhea, etc. have all been pretty much eliminated on just a Gluten-free Casein-free diet and only really return if I get glutened or eat too much fruit.

    Seeing that the SCD is mainly for people with Crohns and Collitis and people with persistent diarrhea, even after going gluten free, I'm not sure how much it will help me. I still suffer from fatigue and a myriad of other symptoms, especially endocrine related as I think the autoimmune reactions from being glutened over and over have at least thrown off my HPA axis if not caused damage to a few of my organs.

    I guess I have nothing to lose so I'll give it another shot, but since you've probably read more of this behemoth of a thread could you comment on whether this diet works for people without the intestinal problems and just from the fatigue/other symptoms that come as part of being someone with celiac?

  19. Just wanted to give everyone an update. I only have this negative reaction for a couple weeks following a glutening. Prior to making this post I was glutened twice by the Yogourmet Yogurt starter that is often used for the SCD legal yogurt and was feeling quite horrible. The protein in the meats only worsened things, and felt like they were killing me.

    Now that I've somewhat gotten over my glutening, I can again tolerate these foods without a problem. Well everything except the fish/almonds.

  20. After reading the last few pages of the thread, I've found that it has become incredibly derailed with posters advocating all means of what I would call whacky, alternative diets. I do not put much faith in Alkalinity diets, Candida, or any other "vague"/unproven diagnoses that are generally invented out people with no medical background, used to milk money out of people with the multi-million dollar supplement market.

    What I am concerned about though, if the SCD was an effective diet and if it worked would this thread have been derailed as much as it is currently? Would people be willing to try "PH miracle" diets if the SCD had solved their problems? I think the answer is no, and it's pretty disheartening.

    I mean no disrespect, especially to you Yolo as I know you're a valuable poster on the site... I just strongly disagree with a lot of what I consider fad diagnoses.

    I had started the SCD several weeks ago but I had gotten glutened from the Yogourmet yogurt starter (or the casein in the yogurt) so I've felt much, much worse. I now stopped eating the homemade yogurt as I definitely react negatively to casein and I think the assumptions made in the book that 24 hours will make the casein safe is wrong. Something in the yogurt triggered an immune reaction. According to my initial lab results in 2007, I have a very strong IGA reaction to casein.

    I was going to give the diet another chance and came to this thread to read if anyone was having success with it, but so far it doesn't seem that way so now I'm not so sure.

    To elaborate on the yogourmet yogurt starter, it's the only possible thing that could've glutened me as I cook all of my own food and basically only eat fruits/chicken/vegetables. I had similar reactions both times I tried the starter, three weeks apart. I had a very bad flare up of my DH on my chest/shoulders both times, and I've never heard of casein causing a DH flareup. There is a cross contamination warning on the back of the packets.

    Even if the SCD worked, I don't know if it's for me. My reaction and symptoms are almost all autoimmune related. Being glutened for me is a system wide autoimmune attack on my liver and endocrine systems causing various problems with adrenal/testosterone/thyroid as well as liver enzyme levels. I only have D after being glutened, although I think casein does cause the same autoimmune damage even though I don't get any "intestinal symptoms" from it. Being gluten free alone gets rid of the D although I haven't ever fully recovered from the autoimmune symptoms.

    When I am glutened though, I can't eat anything with protein even chicken as it basically feels like it's killing me. A couple weeks after the glutening, I can tolerate protein again but it's very odd that I react so strongly to certain foods just after a glutening.

  21. That's a really good point. You might also discuss the possibility of reactive hypoglycemia (which a fasting blood sugar, and just about any test that isn't measuring blood sugar over time (many hours) when challenged with sugar, won't be able to catch). (In theory, a personal blood glucose monitor can't "diagnose" it either, but you can chart a profile of your reaction to various things fairly easily to get an idea of what your body is doing. Different curves (blood sugar plotted against time) tend to imply different things about non-diabetic hypoglycemia/hyperglycemia and diabetes.)

    I keep checking my blood sugar over and over to make sure it's not a problem. Fasting, it hovers around ~100, and I've never seen it below 80 ever, or over 180 even after a meal.

  22. As you can probably tell from my other post, I'm having problems with certain foods that I shouldn't be. The gluten-free diet has been very helpful, but there seem to be residual symptoms - especially severe fatigue. I was diagnosed Celiac, and I think it was the root catalyst but I think that it caused other problems.

    So I suffer from brain fog and severe fatigue, and it seems to be directly correlated to what I eat but these are foods that I shouldn't have reactions to.

    I want to try the Specific Carbohydrate Diet in full and give it a chance to work but my gastrointestinal symptoms have all been fully resolved following my gluten-free diet. I no longer suffer from D or loose bowels or anything and those specific symptoms only return when I'm glutened. I can't tolerate dairy, or several other things, but none of them cause gastroinestinal symptoms - they just cause severe brain fog and fatigue.

    Everything I've read indicates that the SCD is for people with diarrhea and Crohns, and I have neither. Is there any literature or anything anywhere where the people behind the SC diet recommend it to people like me without those particular symptoms? Anything?

    The food I am eating is causing problems for me. That I'm sure of, but the problem is that it's too hard to eliminate everything. Protein may be causing problems but if I eliminate that, I must consume carbs. If I eliminate carbs, I must consume meats. I am absolutely positive I'm not being glutened btw. I was glutened about 4-5 weeks ago and it's caused a flare up in these symptoms. It's almost like anything I eat now is just draining me of energy.

  23. I've been gluten-free for about a year and a half and while I've shown drastic improvements, such as the remission of DH, I have unfortunately not recovered fully. One of the things I've noticed are secondary food intolerances to things such as nuts, fish, beef, and so forth.

    Eating a meal consisting of several foods such as fish would heavily sedate me and literally make me pass out for hours. For the next 36 hours I'd feel like I was in semi-shock, very lightheaded, unable to think, and like I was hit with a tranquilizer. It also felt like it was causing an autoimmune reaction. This reaction occurred to varying degrees with several different foods.

    At first I thought it was maybe an allergic reaction to fish, eggs, nuts and so forth but today I had a similar reaction with my chicken heavy meal and I've started to suspect something else. All of these foods are protein heavy. It seems like the foods with more protein such as the fish, eggs, beef, and nuts make me feel much worse than the foods with less protein such a chicken. Now I'm starting to suspect that I can't digest protein, now keep in mind that gluten is a protein.

    I have to get to the bottom of this because I'm 23 years old and every time I have one of these reactions, it feels like I'm killing myself. I recover afterwards but it's hard to describe just how bad this makes me feel. It's not your typical "feel tired after a meal" thing, I'm talking about full blown, I couldn't walk across the room without falling, or even keep my eyes open and not pass out. It also interferes with the way my brain works, I feel "dumber" and definitely fogged. I start losing track of words and while not incoherent, I definitely lose literacy.

    I've tried digestive aids and they haven't worked. So here I am. Really baffled. I have done searches and finally I came upon this post:



    It states that a protein digestive disorder can happen at any stage of life and is life threatening due to ammonia buildup in the blood. Very worrisome.

    The SCD page also has a page that says the protein digestion can be difficult with built up mucus and inflammation.

    Now when I go long stretches without being glutened, I think I can tolerate protein a little bit better. When I am glutened, like I was a couple weeks ago and try to eat protein then I have these really bad reactions, although I'm not sure. I know when I wasn't glutened and was feeling fine, I decided to eat a lot of fish and I had the reaction again and I went from feeling great to absolutely terrible within the space of a couple hours after the meal.

    My liver enzymes have traditionally been extremely elevated but did come down following the gluten-free diet, although I think they may need to be retested and maybe possibly ammonia levels?

    So let's say my problem is protein and not an allergic reaction to these foods, can I even survive without eating it? What do I do? Do I have to give up meats? What would your advice be? Follow an elimination diet?

    I'm so lost at this point and just need help and advice!

  24. You will find many of us on here with lots of other food intolerances besides gluten. And for each person they seem to manifest in a unique way. For me, potatoes, soy, and citric acid are currently all making me itch like crazy if I eat them, sometimes with red blotches, sometimes without. Right now, for the first time in five years, I am not itching!! Yeay.

    Eliminate all the things you are intolerant to and as the previous poster said, maybe sometime in the future you will be able to tolerate them again--then,again, maybe not. It's a crapshoot really. For most of us the other intolerances don't show up until gluten free because the response to the gluten seems to overwhelm the body so that the other stuff doesn't get heard.

    I think they are causing an autoimmune reaction. I feel extremely achey, fatigued, lethargic, brain fogged, even my teeth are aching.

    I haven't eaten fish in 6 months because of this and when I tried to reintroduce them last night, it definitely felt worse than ever. I slept for around 13 hours as well. I expected it really.