Secondary Food Sensitivities, Intolerances And Allergies

[ms-sillyak-screwed]

Almost 6-years-ago I got sick with celiac disease, and no one prepared me for this! I believed I was dying. I faced down the ugly reality of a major life change and went gluten-free & DF. I substituted dairy with soy. I thought I was getting better. It was an easy cake walk; really it was, compared to the journey I would take with secondary food sensitivities that became intolerances and then turned into allergies. I have kept a detailed journal of everything in-and-out of my body. And in my profile are my food/health issues.

I learned about this disease the hard way, and rediscover more eye openers every passing day. Thanx to many of my celiac family here. But [no one prepared me] for these other problems with secondary food sensitive, intolerances and allergies. When it began I was watching the progression but couldn’t understand, why? I didn’t cheat. Not until I read several of the 'new' celiac disease books published in the last 2-years where the authors write about it, and why. It seems this is part of it of some/many of us too?

From what I read diet rotation is helpful from developing more? Also don’t keep eating the same food over and over every day. Not good. It’s important to mix and try new things together.

Please share some of your experiences.

How long was the progression? Years?

What are your ‘other’ food issues?

What are your doctors telling you?

Or what you have found is working for you?

Be well!

[wolfie]

I started having food related issues about 10 years ago, after the birth of my son. They progressively got worse and my dr at the time pretty much blew me off. I figured out myself that I had issues with seeds, raw onions and peppers and omitted them from my diet. I still had times, though, that I couldn't figure out what was making me sick (D and severe cramping). New dr said I had IBS. Then, 6 years later I got pregnant with DD and got worse after she was born. Severe lactose intolerance, constipation, excessive gas. Then I had a relapse with my eating disorder this past fall and saw a nutritionist. She asked if I had ever been tested for Celiac and requested that I be tested. If it wasn't for her, I would still be miserable. Went gluten-free in Jan and can't believe how much better I feel.

I do have several other food issues......soy, lactose, seeds of any kind, onions, peppers and garlic. As long as I stay clear of those in addition to gluten, I feel great!

My dr(PCP) now (the one who said I had IBS), was shocked that my bloodwork came back positive....she said she has never had anyone's come back positive (she probably wasn't testing very many people at the time, but I hope that my case has opened her eyes). She is very supportive of my diet and is still amazed at the difference in the way I feel w/o gluten. She can't explain the other food intolerances, it was really a lot of trial and error and keeping food diaries to figure it out.

It took me a while to narrow down what other foods were causing issues. I had to keep a food diary and then I stuck to a basic diet and only had suspect foods one at a time so I could tell what was the issue. My food intolerance reactions usually occur 2-6 hours after I eat the food, with it typically being 4 hours later. I stay clear of most processed food so that I can easily identify any issues. It is a PITA, but I feel so much better now.

I have read some about rotating foods so that you don't become sensitive to them and do my best, although I do seem to get in a rut sometimes. I do a lot of brown rice and black beans with cheese (and Lactaid of course). It is easy to make and healthy.

[jerseyangel]

My experience with identifying the intolerances are a lot like Kim's. I considered blood testing, but chose to do my version of a rotation diet with a lot of trial and error. It took probably 6 months to sort it out. In my signature is what I have figured out--this is subject to change, of course! I do seem to be doing well omitting the foods below--as well as all other grains. I try not to eat the same foods every day, but that is hard for me--I tend to eat what does not bother me--and that dosen't really leave a lot of variety. Looking back, I believe I always had these intolerances--it took cutting out gluten first and feeling better before I could recognize the rest of it. Maybe if I had known about Celiac years ago, the process would have been easier.....

[shai76]

I've had problems with reflux and tumy aches with constipation and diarhea since I can remember. I guess it was from the gluten. I also suffered from chronic hives my whole life. I was out of school a lot as a teenager for swollen sore glands and headaches any time it would rain,a nd I live in Pennsylvania so it rains a lot (which I find out now is from my extreme mold allergies). In my early twenties I ended up in the emergency room on breathing equipment after eating at pizza hut. They just told me it was asthma and gave me an inhaler. Next thing you know, after eating again I was back in the emergency room. They just treated me like a nuisance. I suffered from the worst eczema for while before I went to a derma tologist who informed me eczema is not caused by food allergies...yeah right. I ended up taking dairy out of my diet anyway and got better. After having my son I had diahrea for months,a nd then started with the chronic hives, asthma, and eczema again. My family doctor tested me and found out I was allergic to eggs and glten intolerant. A few months later they told me to try gluten again, so I did with no symptoms, sot hey said I did not have celiacs. A year later I started having a swollen esophagus, my reflux was to the point I could barely live with myeslf it was so painful, my asthma was out of control, I couldn't take a lot of the meds because they contain milk and I am anaphylectic, the hives were constant. I developed a fear of food which made me drop 22 pounds fast. So they did another blood test, with positive celiac antibodies, so they did a colonoscopy and an endoscopy. Everything int he colonoscopy was normal. They said the endoscopy was normal, but I asked for the results anyway and here it says I have eosinphilic esophagitis, a hiatal hernia, gastritis, and that I am severly refluxing into my throat (causing swelling). I saw a pulmonologist, who finally sent me to an allergist/ENT. He did a larngoscope and found swelling from the reflux, and put me on prilosec twice daily. He also did allergy testing and now I am going through immunotherapy. I am feeling a little better,a nd have actually included corn back in my diet without any symptoms. I am hoping to eventually overcome my food allergies. So far I am allergic to milk, eggs, wheat, oats (yes, I am allergic as well as intolerant), soy, fish, tree nuts, turkey, yeast, as well as many environmental/inhalant allergies. I am anaphylectic to dust, mold, milk, wheat, eggs.

[kabowman]

I had problems that were not properly identified as a early teen but got better. After kids, I started to develop all my problems. After my first pregnancy at 24, is when I started to have my joint pain, now at almsot 40 (next month!!!), it is basically mostly gone.

It took me months for the first ones years ago but once I got soooo bad that I couldn't ignore it any more, it took about 6 months with an elimination diet and food diary to get the last of it straightened out.

My last doc, said, oh, those are just allergies, deal with it and no, move on. So I did, to a new PCP. She wasn't aware of celiac disease but she chatted with the GI doc and he is aware so scheduled my EGD. Anyway, she said, good, glad you figured all that out.

Talked to my allergist and he asked my process said good too and I asked about intolerance testing, which he said he doesn't support because what they return is too broad. You may not be able to have this lettuce but you can have that lettuce but the test won't say that - it will just say you are intolerant to lettuce. They recommend an elimination diet.

At least my boys, with my experience, are not suffering the way I did growing up, except when they are at their dads house because he refuses to believe they have food issues.

My step daughter is lactose intolerant but refuses to accept and so is always feeling crampy and sick. I told my hubby, same rules appy to her that appy to my boys, they knowingly eat something that bothers their tummy, then they can't complain about it...it was their choice and they know how I feel. Last I heard there was some comment about it not being a prescription - well if that is the case, no more OTC cold meds that she takes and no more OTC pain relievers. OK, I digress...but I was the one who identified she is lactose intolerant which is probably why she and mom won't believe it.

My boys do NOT have celiac disease - oldest is intolerant to nitrates and cinnamon - youngest is lactose intolerant. My food limitations are listed below.

[Katie O'Rourke]

I was diagnosed 2 and a half years ago now, when I was 19. My dad has been diagnosed for nearly 20 years now, and it was only through mentioning this to my GP that she had my blood tested for coeliac disease. I have been ill since about age 10 - though I cant remember very much to be honest. But it got to the point where I had severe internal bleeding-intetsines, and hiatus hernia, with acid reflux oesphagitis (which I discovered I'm allergic to the treatment for),and I decided I'd had enough. So I had an endoscopy, followed by sigmoidoscopy,and had biopsies taken from each. Biopsy was positive, but didnt get any better really on the diet, even though I have stuck to it. Dad is also ill if he eats broccoli or cauliflower, as well as gluten, but he can feel/be sick just from walking to close past a baker's shop.

On the other hand, I can be ill after eating things which are gluten-free, but have trace amounts of barley or malt extract, and dont have malt vinegar either. Its not full blown reaction, just very nauseous. Also, just a few months ago now, as I am still having trouble, and am still anaemic, and still having trouble with my gut bleeding, my consultatnt wanted to look further into whether I ahd some sort of cancer, becasue he'd forgotten abotu doign the sigmoidoscopy before. Then wanted to do exploratory surgery, which I wasnt too keen on, so eventually settled for change in medication, as he says that I have IBS, as well as possibly something else too. So am now avoiding gluten, malt extract, seeds, nuts (but fine with smooth peanut butter), coconut, spices, curry, chilies. Also cannot have alcohol or aspirin or ibuprofen,as my blood clotting is so appalling, but I dont want any mroe tests done to lok into it - I have a really bad phobia of needles, which is so bad I had all my biopsies, and tests without any sedatives or anything.

Also, because I often get acid reflux oesophagitis/hiatal hernia after being glutened, I also often have to avoid anything acidic - tomatoes, caffeine, fruit, fruit juice, etc.

Good luck to everyone else with keeping to their diets though

Katie