Help! I Seem To Be Intolerant Of Everything!

[shayre]

Hi. I am new to this site and all of these issues. I am soooo in need of help! The story...I've always had chronic, severe constipation. I went through all of the GI docs normal talks...fiber...fiber...yaya. I was eventually prescribed miralax and amitiza that I've been on for years that hardly help. After I had my first child about 5 years ago, the gut issues got more severe...and I kept getting a rash on the back of my arms (dermatologists called it Keratosis Pillaris...with no known reason for it). After the second baby 15 months ago...my body went completely haywire!!! I have lots of questions for all of you, and would appreciate any information! The rash spread to my belly, legs and back. I had severe nueromuscular issues that would come and go, along with terrible muscle and joint pain and weakness. I've seen all kinds of specialists with no answer so far. There was some blood work that was off, but not the second time. One day my husband suggested that I might be allergic to dairy, so I cut out dairy for a week. The rash improved. I started doing research and cut out gluten. The rash got better again, but not gone. I did have a lower and upper GI scope a few months after the birth, because of the pain in my gut and low back. It was negative for celiac, and the blood work was ok. My doc said that it didn't mean that I DON'T have it...but avoiding gluten is all that I need to do if I do have it...or if I'm just intolerant. So, I cut out all of those things, and have spent a great deal of time learning about hidden gluten, etc. I did better, and for the first time in my life...I was having a BM everyday WITHOUT medication. I messed up in April at my son's 1st birthday party, and have not been the same again! Everything just keeps getting better...then worse again. I can't tell what the problem is. I don't know if I'm sensitive to cross-contamination, so I've been emailing all manufacuterers of everything that I eat. One of them suggested that I might have a problem with soy, so I cut that out...along with any soy derivatives (that I know...like "gums"). I did seem to improve, but not for long. I was also told about some LEAP tests to determine intolerances, and another for delayed intolerances. I meet with my GI doc in a couple of weeks to talk about that. I have cut out everything. I only eat rice, chicken, baked potatoes, corn and veggies, salad (no dressing), fruit, lactose free milk...and some items that say that they are free of all of these things like org, gluten-free cereal, etc. I eat no spices. However, I'm still in turmoil. I feel the best when I'm starving, and don't eat anything (but then I can't do that). I have question about whether or not I have problems with fruit and juice. I feel sick and more bloated after I drink any juices...even organic. I question sulfites, yeast, fructose too, meat...but that would mean that I can't eat anything! I am sooo up in arms about how to figure this stuff out!!! I am miserable most of the time, and my husband and I make jokes about how many months pregnant I look from the bloating! I haven't gone to the bathroom in 2 weeks...ON medication. OMG what am I to do now? Does anyone know what is wrong with me? I did take the genetic test for celiac disease, and it came back as "VERY HIGH" risk, so at this point...I am just assuming that I have it, and that the first test was wrong. My mother's side of the family all have food intolerance, but no one sees a doc about it...or talks to each other about it. Does anyone know if these intolerance tests are helpful or accurate? Will I be happy after that? Does anyone have any helpful info? Thank you soooo much! I am desperate!

[glowball]

Hi! I'm new to this forum, but maybe I can help a little. I turned out to have celiac and didn't find out until a suspicious thyroid doctor checked it out. Basically, I don't have "obvious" gut reactions to gluten, but it turns me autoimmune against my thyroid. And I have managed to pick up the following intolerances on the way: gluten (of course), but also lactose, casein, egg - yolk AND white, soy, and a couple of nuts (boring ones like cashew, so no big there). One of my problems was that all the different intolerances had set me up for some real intestinal difficulties which didn't clear up until:

1. I went completely clean of all known intolerances for more than 3 months (and it sounds like you're really working that) and

2. I went on a very strong probiotic - because all the wierdness had thrown off my - I guess the term is bioflora. You might want to look into that. It even made a difference in how well I metabolize my thyroid meds. Just be sure that the probiotic - and its encapsulation - is free of all your intolerances.

I hope this helps.

[jststric]

Hi! I'm new to this forum, but maybe I can help a little. I turned out to have celiac and didn't find out until a suspicious thyroid doctor checked it out. Basically, I don't have "obvious" gut reactions to gluten, but it turns me autoimmune against my thyroid. And I have managed to pick up the following intolerances on the way: gluten (of course), but also lactose, casein, egg - yolk AND white, soy, and a couple of nuts (boring ones like cashew, so no big there). One of my problems was that all the different intolerances had set me up for some real intestinal difficulties which didn't clear up until:

1. I went completely clean of all known intolerances for more than 3 months (and it sounds like you're really working that) and

2. I went on a very strong probiotic - because all the wierdness had thrown off my - I guess the term is bioflora. You might want to look into that. It even made a difference in how well I metabolize my thyroid meds. Just be sure that the probiotic - and its encapsulation - is free of all your intolerances.

I hope this helps.

I am very much the same as "glowball" I had been lactose-intolerant for about 15 yrs when SUDDENLY the symptoms I had with that went into turbo-drive and it wasn't the only thing bothering me. It took MONTHS of eliminating foods from my diet but ended up with glutens, dairy, eggs, nuts, rice, beans. Allergy tests found a couple of things that had NEVER bothered me but nothing that WAS bothering me was on the test. My doc was pretty clueless but she DID tell me to get probiotics in me. Being dairy-intolerant made that hard but finally found an allergen-free supplement company online. It does help GREATLY and I still take 2 pills daily of that. I just learned I am very low on my Vit. D and needing to add an additional 2000iu's to my daily 2000iu's I am already taking. I've read its not uncommon in people with food intolerances like us. It's not an easy diet!! But you do get used to it. Hang in there!!

[shayre]

That does possibly shed some light on things. It's funny you should mention your thyroid problems, as I also have Hashimoto's autoimmune thyroid disease! What is the connection? Both my GI doc and my endocrinologist have very good reputations, but never mentioned anything! I also had to ask for the intolerance testing myself out of shear frustration. Do you have other syptoms too? I also have PCOS (or thing women's pcos)...where my testosterone levels are a little too high, and my LH and FSH are reversed in ratio. I had to go through lots of infertility challenges and IVF to get both of my kids. I had already figured a connection between the two endocrine problems, but never thought that it would be due to celiac disease. Wouldn't I have tested positive for that before...if that were the problem? I only thought that the biopsy was wrong, because maybe it had just been triggered by the c-section and their was no damage yet. However, I've been having issues for a while before that, so I would think that would show? So you had all of the intolerance testing? How does that work? Also, what probiotic helped you? What were your symptoms of celiac, since you said that it wasn't usual? Gosh this opened up so many more questions!

[Chakra2]

I found out about my gluten intolerance (or celiac disease -- still don't know which) after getting very sick after the birth of my first baby. I have read on an NIH site that childbirth can trigger autoimmune diseases or make them worse so that might be what is happening to you.

I have also read that PCOS, fertility issues and Hashimoto's can be related to celiac disease and gluten intolerance. So maybe keep exploring the connection there.

For what it's worth, I felt allergic to everything and totally haywire for the first 4-5 months of being gluten free. I think that was partly because it took time to figure out the diet and partly because it just took time for my immune system and intestines to chill out. Eliminating gluten, dairy, soy, corn and nightshades (including potatoes) really helped me, as did working with a holistic nutritionist to figure out how to get enough nutrition to support the healing process. We also made our whole house gluten-free so that I don't have to worry about cross-contamination from hubby or babe's food. Oh and this was hard for me but I recently realized that eating out and eating at other people's houses was causing me to get sick over and over again, even if my food didn't actually have gluten in it. I did an experiment of just eating food from home for 3 weeks and all of the sudden -- no mysterious symptoms!! I'm hoping to get back to eating out once I'm a little more healed up. Last but not least, getting rid of all bath products for myself and my son that had gluten or soy really made a difference too. It seemed like I was "taking this too far" at that point but I couldn't argue with the results.

Good luck getting this figured out!

[mushroom]

Most of the doctors you will come across do not recognize the connection between other autoimmune diseases and celiac/gluten intolerance, but don't listen to them, it does exist. Despite what my rheumatologist says Alleopathic medicine is only just starting to cotton on to the full spectrum of symptoms associated with gluten intolerance and the havoc it can wreak upon the body. It's hard not to blame them, but it's what they've been taught in medical school, and trying to keep them current with research into things the pharmaceutical companies are not promoting is a tough row to hoe.

PCOS and infertility and Hashimoto's are all definitely related. I think it should be mandatory for IVF clinics to test their patients for gluten intolerance before offering treatment, but then I think that before a doctor even considers a diagnosis of IBS he should do celiac testing. To most doctors this sounds extreme; to gluten intolerants it just makes basic sense.

[lucia]

I only eat rice, chicken, baked potatoes, corn and veggies, salad (no dressing), fruit, lactose free milk...and some items that say that they are free of all of these things like org, gluten-free cereal, etc. I eat no spices. However, I'm still in turmoil. I feel the best when I'm starving, and don't eat anything (but then I can't do that). I have question about whether or not I have problems with fruit and juice. I feel sick and more bloated after I drink any juices...even organic.

Hi shayre, welcome to the site!

I'm like you in that I'm trying to figure out what foods I can't tolerate. I've resorted to an elimination diet. That may be the best solution for you, as well. I thought that I would hate being on such a restricted diet, but instead I'm enjoying it because my gut finally feels alright! If you decide to go that route, there is a lot of info on this site about how to proceed.

A few things stand out from your post:

- If juice makes you sick, stop drinking it IMMEDIATELY. You told us that you already know that it's an issue.

- If juice is making you sick, you could have an issue with fructose and/or candida. I don't know much about that, but other people on the site do. You can search on "fructose intolerance" to find relevant threads.

- On the other hand, you may be reacting to a specific food item. For example, a lot of recently-diagnosed celiacs can't handle citrus fruits. Is it orange juice that is making you sick? Oranges and grapefruits?

- Some people still react to lactose-free milk. I don't know why, but for that reason it may make sense to switch to rice milk (watch out for certain brands, again you can search on this site), almond milk, or coconut milk.

- You said that you eat gluten-free items. I'd suggest cutting these out and seeing if you feel better. They're not easy to digest, and they often contain trace amounts of gluten (odd, I know) as well as soy, corn, and other foods you may be intolerant to. Initially, as you heal, it's easier in general for your system to process whole foods. Try limiting your diet to just whole foods for now and see how you feel.

I really hope you feel better soon! I can definitely relate, and it's miserable. But I found relief, and I hope you can too.

[shayre]

Hi. Okay, there lies the problem for me. I have eliminated nearly everything. No, I quit juice. I do mix Miralax with some OJ, as it does not appear to bother me. I was drinking apple and white grape juice, not anymore. I did think that I might react to apples and grapes themselves, so I quit grapes...vegan wine...and balsamic vinegar. I went to organic apples, because I read during my research that some companies will spray soybean oil on the apples for waxing. Organic apples are supposed to be free of that stuff.

I also did research on wine, and found that usually all grapes are sprayed with sulfites. Some of the sulfites are actually absorbed by the roots into the grapes. So, I don't know if I might have a problem with sulfites or the grapes. FYI, I also found out that most wine companies use milk in the "fining" process of their wines, so some of us dairy intolerant people may react to that. I did confirm this with a couple of the wine companies that I drank. I found some vegan wines at whole foods that say "no sulfites detected", but I still haven't been able to determine their effect on me with all that seems to bother me.

I've read on here that some of you have a problem with potatoes, tomatoes, rice, corn, fruits, other veggies, eggs. Seriously, that's all that I have left. I did switch to almond milk after my first post. I thought that it may be helping, because maybe casein is the problem...now i'm still bloated. I think that I had a bad few reactions to tomato. I originally thought that the corn chips and salsa or the gluten-free pasta sauce were contaminated, but then I ate a whole tomato from my mom's garden on a salad with no dressing...and I was sick. However, I also had an organic apple right after.

I have cut out everything that is not whole from the earth, EXCEPT my morning gluten-free rice krispies (free of all), and gluten-free cheerios with fresh fruit. Oh, and gluten-free oatmeal. Other than that it's chicken, rice, potatoes with chicken, salad, no spices, fruit. I feel like I ought to cut out more, but that would leave me with rice, chicken and water. Is that my only way? BTW, what am I looking for in rice milk cautions?

[shayre]

Okay, one of you mentioned fructose intolerance. I thought i'd look that up on the net at some point, but I had watermelon yesterday and started feeling sick and bloated. I immediately went to my computer (my best friend these days), and looked up fructose intolerance. Well, I can't believe it...and a little depressed. All of the fruits that I thought I had issues with are at the top of the list for offensive high fructose foods. Ugh! Before this whole issue was an issue...I ate healthy, but lived my life on dairy (mainly my yummy yogurt, turkey sandwiches (no bread now) and FRUIT! So, now I've had to cut out everything that I love. Honestly, I know that all of you are in the same boat...but I'm having a hard time NOT being angry and a little depressed. I really hope that I will be able to add foods back in. I don't even have a diagnoses of celiac yet, but still have all of these food issues. Does anyone who has non-celiac gluten intolerance have this many food issues? Or can I just bank on the fact that it's got to be celiac disease? And really, does anyone with non-celiac intolerance really believe that they don't have celiac? I'm so sorry for my ranting on about my stuff...I'm just soooo frustrated!!!!!!!!!!

[mushroom]

Okay, one of you mentioned fructose intolerance. I thought i'd look that up on the net at some point, but I had watermelon yesterday and started feeling sick and bloated. I immediately went to my computer (my best friend these days), and looked up fructose intolerance. Well, I can't believe it...and a little depressed. All of the fruits that I thought I had issues with are at the top of the list for offensive high fructose foods. Ugh! Before this whole issue was an issue...I ate healthy, but lived my life on dairy (mainly my yummy yogurt, turkey sandwiches (no bread now) and FRUIT! So, now I've had to cut out everything that I love. Honestly, I know that all of you are in the same boat...but I'm having a hard time NOT being angry and a little depressed. I really hope that I will be able to add foods back in. I don't even have a diagnoses of celiac yet, but still have all of these food issues. Does anyone who has non-celiac gluten intolerance have this many food issues? Or can I just bank on the fact that it's got to be celiac disease? And really, does anyone with non-celiac intolerance really believe that they don't have celiac? I'm so sorry for my ranting on about my stuff...I'm just soooo frustrated!!!!!!!!!!

Shayre, I think you probably should approach the question from a slightly different perspective. It really does not matter what you call it... celiac, gluten sensitivity, gluten intolerance, anything-else intolerance - it just IS, no matter what name you give it. And it will be what it is no matter what you call it. I don't know whether I have celiac disease or not, and if I did know it would not make any difference to my life, and what I can or cannot eat.

Now it is perfectly natural to grieve for the foods you have lost, some of which you may never have again, or which you may be able to tolerate again. I just added back in ice cream And it is okay to rant and rave a little about the loss, but at some point the grieving must end and acceptance arrive. This is when you start getting more creative about what you eat. Instead of thinking about what you can't eat you think about those things you can and how you are going to put them together in an interesting and tasty way. Now this point arrives at different times for different people, but if we are going to live any kind of life, we have to get there eventually. Nobody is going to wave a magic wand, or give you a pill, and make it all go away

Hang in there, and {{{{hugs}}}} for strength.

[GlutenFreeManna]

I have cut out everything that is not whole from the earth, EXCEPT my morning gluten-free rice krispies (free of all), and gluten-free cheerios with fresh fruit. Oh, and gluten-free oatmeal. Other than that it's chicken, rice, potatoes with chicken, salad, no spices, fruit. I feel like I ought to cut out more, but that would leave me with rice, chicken and water. Is that my only way? BTW, what am I looking for in rice milk cautions?

Many, many celiacs react to oatmeal, even GLUTEN FREE Oatmeal in the same way as gluten containing grains. Some lists for grains that have gluten will even have oats included. Technically they don't have the same type of gluten as Wheat, rye and barely, but many of us have to avoid oats all the same. I think you should try cutting out the oatmeal and see how you feel. And the same goes for those other cereals if they have oats in them.

[mushroom]

Is that my only way? BTW, what am I looking for in rice milk cautions?

Rice Dream claims to be gluten free but is processed with barley, and some people react to it.

[Bennie]

hello Everyone

Shayre, I feel for what is going on with you- it is hard to not know what is causing the problem! I am reading a book that you can check out if you wish, it was writen 10 years ago. 'The Protein Power Lifeplan' by Michael R. Eades, MD and Mary Dan Eades, MD. I am not on a Meat/vegetables only diet- but I really like the info and explanations that he gives in the book. I find the title misleading, most of what I have read is about sugar and grains. He believes that we are not meant to have grains at all... anyway, check this out if you are interested.

I do not tolerate gluten, corn or milk protein (casine; different than lactose- lactose being just the sugar). I try to limit my sugar as well.

Have you had your vitamin/mineral levels checked?

[lucia]

I've read on here that some of you have a problem with potatoes, tomatoes, rice, corn, fruits, other veggies, eggs. Seriously, that's all that I have left. I did switch to almond milk after my first post. I thought that it may be helping, because maybe casein is the problem...now i'm still bloated. I think that I had a bad few reactions to tomato. I originally thought that the corn chips and salsa or the gluten-free pasta sauce were contaminated, but then I ate a whole tomato from my mom's garden on a salad with no dressing...and I was sick. However, I also had an organic apple right after.

I have cut out everything that is not whole from the earth, EXCEPT my morning gluten-free rice krispies (free of all), and gluten-free cheerios with fresh fruit. Oh, and gluten-free oatmeal. Other than that it's chicken, rice, potatoes with chicken, salad, no spices, fruit. I feel like I ought to cut out more, but that would leave me with rice, chicken and water. Is that my only way? BTW, what am I looking for in rice milk cautions?

Hi Shayre,

It sounds like you're learning a lot about what you cannot tolerate - and that's good! This is a process - physical as well as psychological. Understandably, all of a sudden your body isn't working the way you've come to count on it, and you're frustrated and maybe overwhelmed. At least that's how I feel, and I worry about the future since so many foods seem to make me sick. It's also hard because I don't have a medical professional who can help me with this. I'm trying for now to "stay in the moment" and concentrate on what I can do to feel better.

A lot of people on the site go down to a small set of foods in order to identify what is making them sick. It seems to be a "normal" experience for newly-diagnosed celiacs/gluten intolerants, although it's bizarre, of course, to the rest of the world. There is a lot of information out there (and on the site) about how to create an elimination diet. Right now, I'm only eating: sesame seeds, organic tuna, quinoa, sweet potatos, kale, bananas, olive oil and sea salt. I tried to add some herbal tea (since I miss my cup of morning tea so much), but I haven't found anything that doesn't make me sick. When I only eat these foods, I don't feel sick; my GI reactions go away and even my neuropathy clears up. It's been a relief, more than a burden.

But maybe eliminating oats will be enough to make you feel better. In any case, you're not alone!

lucia

[shayre]

Thanks so much to all of you! I WAS actually diagnosed with celiac disease at my GI doc appt this morning. I knew that I had it, but it still came as a blow to me for some reason. I guess that I held out hope that I wouldn't have to deal with this for the rest of my life. My doc is very concerned that I've lost so much weight. I still needed to lose pregnancy weight, but it did suddenly start dropping off. He thinks that I'm probably malnourished, and he was extremely concerned. He ordered a bunch of vit/min tests, so I don't know what those are yet. He said that I've probably had it since childhood, and that the severe constipation problems I had my whole life have probably come from all of the undigested food...due to lack of enzymes...due to damage to the intestines. I also have had low iron issues, hashimoto's thyroid disease, PCOS, etc. He thinks that it's all likely because I've gone undiagnosed with celiac most of my life. He also said that I was double whammied with my genetics. Ugh...now I have to worry about my kids. My 5 year old shows some signs of lactose intolerance. My 16 month old has had severe reflux since he was born...with no cause for it.

Anyway, I urged my doc to test all of the intolerances that he could. If I've unnecessarily cut out some foods...I need to eat them! He said that he could do sugar testing, otherwise it's trial and error. Is that true? I read that you could do intolerance testing...LEAP. I still don't understand how I've been off of gluten for months and I still apparently have enough damage to keep being intolerant of food. Aren't I supposed to be healed by now?

I did cut out the gluten-free oats for about a week now, and no change. I really don't think that was bothering me. Fruit...I can believe that now. I still have lots of work to do. The doc says to take 2 different kinds of antibiotics for 2 weeks, along with probiotics to generate a good intestinal flora again. Then I meet with him in a month to discuss a diet plan that will provide what I need. It's funny, I pointed out that there is lactose in one of the probiotics. He looked and said, "huh, well I don't think that it will be enough to bother you." Okay...

[sweeeeet]

Wow, feeling your malnourished pain! Celiac runs in my family too, so does lactose. I think probiotics have helped me tremendously. People on here are talking about Nystatin. I wanted to take that but my GP seemed to laugh at me. Does that sort of thing really help? It sux for me to be eating fruit cocktail and ice pops all day because that's the only thing I can tolerate right now

[shayre]

Wow, feeling your malnourished pain! Celiac runs in my family too, so does lactose. I think probiotics have helped me tremendously. People on here are talking about Nystatin. I wanted to take that but my GP seemed to laugh at me. Does that sort of thing really help? It sux for me to be eating fruit cocktail and ice pops all day because that's the only thing I can tolerate right now

What is NYstatin?

[Bennie]

It can take your intestine 3 months to heal after a very small amount of gluten. If you are on Meds, make sure and tell your pharmacist and ask if the meds you are on contain gluten or casine.

Raw, unpasteurized sauerkraut is also a source of good bacteria, and is lactose free, and a heck of a lot cheaper than probiotics in pill or liquid form. Have you tried talking to anyone at a health food store about this? They can sometimes be very helpful.