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jrlaird

Multiple Food Intolerances - Do They Ever Go Away?

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Hi everyone!

 

I was diagnosed with Celiac last August after almost two years of not feeling well. I admit it took me a good two months to adjust/come to terms with my new lifestyle. I would still gluten myself occasionally, whether it be at a restaurant or by not thoroughly reading a food label. But eventually, I had become a master of this disease -- I had completely decontaminated my kitchen, learned all the ways of cross-contamination, all the places that gluten can hide, and to rarely eat out at restaurants unless I knew for absolute certain it would be safe. 

 

After about a month of truly living gluten free, I was feeling awesome, better than I had in years. I had energy again, my mood had lifted, and I felt like I could conquer the world! But that was short-lived as other food intolerances began to set in. It took me a while to pinpoint what was causing me to feel ill, but through dedicated work in my daily food journal, I discovered that dairy was off the table. It caused me to feel slightly nauseous (sometimes for days), joint pain in my hands and feet, and fatigue. Around the same time, I discovered that eggs were also a problem. After a few days of feeling pretty good again, I made scrambled eggs for breakfast and felt nauseous halfway through eating them. So I then crossed those off the list.

 

I felt like I was starting all over again, having to learn how to read food labels to look out for milk proteins (whey, casein), and had to adjust my cooking by searching for substitutes that were safe for me to eat. I will be honest and say I got pretty defeated during this time because the social implications of this disease were already enough for me to handle, but now I had even more things I couldn't eat. 

 

I wish I could tell you it got better after that. Fast forward about four months and now all of these are off the table:

 

Gluten

Dairy

Eggs

Peanuts

Lentils (and possibly all legumes, jury's still out on this one)

Quinoa

Xanthan Gum

Caffeine

Soy

 

It took MONTHS of tracking everything I was eating to finally narrow some of these down. And you know what? It's worth it, but it sucks. It sucks to feel like crap 90% of the time because you still don't know exactly what is causing you to feel that way. Just this morning I finally pinpointed soy. I had actually felt AMAZING for the past day and after breakfast my mood suddenly changed and I became very irritable, I got very tired, and good ol' joint pain creeped up in my hands and feet. I had eaten Applegate Farms sausage links with maple syrup and Van's gluten free/dairy free/egg free waffles. After looking at all the ingredients listed, I knew soy was the only one it could be.

 

So my question to you all is, do these additional food intolerances ever go away? I am trying to stay positive, and for the most part I am. It's forced me to become a better cook and to eat healthier. That's a good thing! But these intolerances affect my mood and that's what I hate the most. I always want to feel energetic, social, and happy, but when under the influence of these I just don't. I am taking a probiotic nightly (on an empty stomach) called Florajen and my digestive issues have really improved since taking it. I've read that probiotics can help with food intolerances and possibly repair leaky gut, so I figure it can't hurt.

 

Anyone care to share their experiences with these annoying food intolerances? 

 

Thank you!

 

Jonathan

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YES!!! (At least they did for me.) Substitute some of the things on your list with others and our stories are almost identical. One month in I too felt better than I probably ever had. And shortly after that the other intolerances hit.

 

For me corn was the worst, both the symptoms and the fact that it is in everything. I was also intolerant to soy and blueberries and almonds, most fruit, and the list goes on and on.

 

It took three and a half years but my gut finally healed and now gluten is the ONLY thing I can't eat.

 

Well, let me qualify that - I still get joint pains if I eat too many nightshade vegetables. I can eat them two or three times a month. Any more than that and the pains start. But after living on such a limited diet for over three years I don't mind if I can only have a baked potato once in a while.

 

There are some folks here who got some but not all of their other intolerances back, but I think just about everybody got at least some of them back.

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Thank you for the glimmer of hope!

 

It is interesting that our stories are so similar. Here's another question for you: how did you discover that your intolerances went away? I can't imagine you wanted to chance eating the foods again knowing the horrible symptoms they'd given you in the past. Was it just a gut (pardon the pun) feeling that you were able to eat them again? Did you discover it by accident? I'm curious.

 

I'm in the midst of a puzzle myself this afternoon. I thought soy was the culprit after my breakfast today, but then I realized that the hummus I eat at least four times a week (Sabra Roasted Red Pepper) has soybean oil in it and I have absolutely no reaction to it! So it can't be soy. I'm starting to think it is either flaxseed, safflower, or peas (pea protein is in the Earth Balance Soy Free buttery spread I use on my waffles). Figuring these damn intolerances out can be so frustrating!  <_<

 

One last question: how long were you not feeling well before you were diagnosed with Celiac?

 

Thank you for your input!

 

Jonathan

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Well, the first thing that happened was I got an abcessed tooth on a weekend. Up until then I had been having my medications made at a conpounding pharmacy because most everything (if it doesn't have gluten) has corn starch as a filler. Well the compounding pharmacy wasn't open on the weekend so the doctor said I HAD to take regular antibiotics with corn starch. I didn't get sick!

 

Now I KNEW corn starch USED to make me sick, but I also knew that corn starch didn't have much if any corn protein in it, and it is the protein most people react to. I figured I had healed enough that it didn't bother me anymore. Then I got glutened (the one and only time that has happened since I went gluten-free.) I lost corn starch again, but after a couple of months I got it back.

 

Then I read that corn oil didn't have corn protein in it either so I bought a bag of potato chips cooked in corn oil to test it. I ate exactly two chips (because after all, nobody can eat just one) and didn't get sick. The next day I ate a handful. Still didn't get sick. After that I knew corn oil was safe for me.

 

Next I got some Udi's multigrain bread. It has corn syrup solids in it and corn syrup DOES have corn protein. I didn't get sick. That was when I realized I was healed. I then bought some soup that had soy. No problems. Then almonds, and a bunch of other stuff I couldn't eat before.

 

I have only been free of these other intolerances for a few months now but let me tell you, I have been celebrating!!

 

How long was I in denial about having celiac? I knew I probably had it because my Mom had it and I knew enough about it from what she went through, but I hate to cook and am not good at it. I pretended it was other things causing me problems. I'm pretty sure it started when my Dad died back in 1995. I finally cried uncle and went gluten-free in 2011. So 16 years!

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Oh yeah, I forgot to mention I tried blueberries about every six months. They are my favorite and  I was determined to get them back. It took three and a half years but I've got them back now.

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Combined food intolerances are common. Lactose intolerance can trigger or worsen fructose malabsorption, for example. Another issue is that malabsorbed nutrients feed bacteria and can lead to small intestinal bacterial overgrowth (SIBO), which in turn worsen a food intolerance. When you solve the original problem, the additional intolerances often improve.

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Any tricks you have for how you narrowed down your intolerances?  I'm so bad at keeping a food log.  I was diagnosed over 3 years ago and feeling pretty good until recently (with some ups and downs).  Now I'm dealing with bloating a few times a week.  My doc suggested trying the low fodmap diet but I notice that a lot of the items that many with celiac are intolerant to are considered good to eat on that particular diet.  I did a round of xifaxan to rule out bacterial overgrowth and take culturelle daily. 

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food journal is your best bet - if you have a hard time keeping track of what you're eating, try the 'myfitnesspal' app if you have a smart phone.  it's a free app - helps me count my calories, too, so i can be sure that i am getting enough (trying to gain weight.  always....)  another thing you could do is an elimination diet - it's boring, but it works.  then you can find 'safe' foods to eat while you heal enough to hopefully tolerate some of the foods you have to skip right now (honestly, when i am feeling crummy, i revert back to my good ole' boar's head turkey on udi's. then i can 'reset' my digestive system)

 

lay off the dairy, for sure.  i think i did about 6 months skipping the dairy in the beginning.  then i started out with hard cheese and yogurt and slowly added things back in.  i am still drinking lactaid milk (haha, i like it.  i can probably drink regular milk now)  i had a terrible intolerance to soy, but now i can eat a little so long as i don't overdo it.  KEEP IN MIND that i am 4years plus on gluten free diet, so i have had a considerable amount of time to heal my gut.  citrus still bothers me (uber acidic) and i have to watch my nightshade intake (some is fine, too much is still a problem)  i am still pleasantly surprised at my lack of symptoms when i eat certain foods that used to cause chaos in my gut!

 

probiotics and digestive enzymes have made a huge difference when it comes to digestion.  i take a probiotic (culterelle) at night before i go to bed, then a probiotic/digestive enzyme combo in the morning before breakfast.  then digestive enzyme with every meal or large snack.  if you start taking probiotics, don't be alarmed if your gut sounds like a war zone!  when i first tried them, i was scared off by all the 'activity' in my intestines, so i stopped taking them.  then i researched further finding out that this is normal:  it's just the bacteria setting up housekeeping in your guts lolz...

 

good luck :)  and welcome.

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I agree that a food journal is key to figuring it all out. Without it, I think it would have taken me a lot longer to pinpoint some of my specific intolerances. For example, a few weeks ago, I was eating Sabra hummus as a snack at work for a few days in a row. Each afternoon after eating it, I would get fatigued, my mood would shift and I would become irritable, my vision would worsen (my peripheral vision especially), and a bunch of other weird symptoms. At the time, I blamed it on a Trader Joe's nut & berry mix I had purchased which claimed to contain traces of peanuts (which I am intolerant of at the moment) and so I threw that away after the second day. Because I'd finished my hummus around the same time, and I had eaten hummus before in the past without issue, I never would have thought it was the hummus. Cut to late last week when I had a period of two or three days where I was feeling fantastic again. And then for breakfast I made myself some Van's waffles (gluten free, dairy free, egg free) with 100% maple syrup. Shortly after, the same symptoms I experienced the previous week hit me. And the only thing in the waffles that seemed to make sense to me was SOY. So I read through my food journal and remembered the last time I felt this way. I found that I had consumed the Sabra hummus on the days I felt like crap. Could it be that? Surely not, since in the past, it never bothered me!  So I then looked at the Sabra hummus ingredients, and sure enough, there it was: SOYBEAN OIL. Bam. Honestly, I would have forgotten about the hummus and still probably wouldn't have made the connection. 

 

Also, I second the probiotic suggestion. It has helped my digestive issues IMMENSELY. And there is research out there that suggests it can help with food intolerances as well. I am taking Florajen-3, which is free of all the foods I cannot eat at the moment.

 

Best of luck to everyone! This isn't fun!

 

Jonathan

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Great info - thanks!  I take Culturelle daily.  Have you found taking it at night more effective?  Do you have a brand of digestive enzymes you recommend?  I think I may need to add that to my regimen. 

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i use generic:  cvs and walgreens both have digestive enzymes that are gluten free (and soy free, yay!)  they also have store brand probiotic and digestive enzyme combinations (those are the ones i take before breakfast) and i try to switch back & forth between the two store brands.  recently, i tried the cvs brand digestive enzymes recommended for people over 50 which has (i guess) extra magnesium ?  anyway, seems to be working pretty well :)

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Sup john!

 

I don't have too much to add in considering Im undiagnosed and probably have several unknown autoimmune conditions, but I had two questions for ya:

 

1)  How did they find out you had celiac? was it from a combination of testing?

2) When you eat these bad foods, how do you know you can't have them? Is it neurological pains or do you get malabsorption/bathroom woes, or both?

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Hi there!

 

I believe my celiac was triggered by either a parasitic infection (giardia) or all of the antibiotics I took to get rid of the giardia, because up until that point, I never had issues with food at all. I felt good generally all the time, drank beer regularly with no symptoms, etc. But once I developed a parasite (from drinking water from a stream while hiking -- worst mistake of my life) I never felt the same afterwards. For a long time, I thought I still had giardia, but my symptoms were different and multiple tests showed otherwise. I went from doctor to doctor and none of them could figure out why I wasn't feeling well.

 

Eventually, last summer, I was over it. I had actually had bloodwork done to test for celiac antibodies, but my results were negative for Celiac. Even though I was "in the clear", I had begun to suspect that celiac really was the cause of all my issues (thank goodness for the Internet) so I demanded to have an endoscopy done, and that is when I finally got my diagnosis. So I am living proof that blood tests are not enough. They are not always accurate. I am so thankful I read online that you should have an endoscopy done in addition to blood work, otherwise I might still not know what was wrong with me. A very scary thought.

 

As far as the food intolerances go, it's been a journey and continues to be one. I keep a food journal and that's how I end up determining what foods I can't handle. Every meal, every snack, every drink, every vitamin, everything. When I don't feel well, I write down my symptoms in the journal as well as the time I started feeling that way.  Eventually, over time, I am able to connect the dots. The reason it's so important to track everything is because you can go back and compare notes. Maybe one day your symptoms match the symptoms you experienced on a previous day. You can look at what you ate that day and this day and look for similarities. If you find a similarity, you can look up the ingredients (if its not a whole food) and start to really narrow down what it is that bothered you. It's not a fun process, but now that I've crossed so many of the foods that make me feel unwell off my list, I am feeling much better because my health is more manageable now. 

 

Here is how my different intolerances affect me:

 

Dairy -- joint pain in my hands and feet, mild nausea, and just feeling "off"

Soy -- mood changes (irritability, sadness, anxiety), vision changes (peripheral vision weakens)

Egg -- nausea

Peanuts -- itchy skin, twitching eyes, mood changes

Quinoa -- short of breath, fast racing heart, lips tingle/numb

Xanthan Gum -- joint pain in my hands and feet, feeling "off", mood changes

 

Let me know if I can help with any other questions!

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waddup!

 

Thank you for your honesty,  it is comforting in a way your blood results were negative,  I have the second highest genetic probablility of having celiac, blood results were negative the doc is redoing my endoscopy as they have fears they didn't go far enough down for my sample, as my first endoscopy was clean even though visually the doc was concerned over the texture of my guts =?

 

Yes, even though i've been gluten and dairy free for over a year I finally pushed myself to the next level and have started a restrictive SCD like diet starting two months ago.  Its rewarding but ABOSULTELY CRAZY sometimes how meticulous you have to be with a journal.  My guts must be still in rough shape,  I tend to quickly fall under the "loose stools" category if I'm not abosultely sure eating my safe foods.  Right now they're well formed I'm trying to expand my food base... ugh.

 

 

Another question if you could sir,  are probiotics the only thing that you are taking?   I am also taking one (sprouts probiotic quatro strain)  but I've heard nothing but good things about fish oil, vitamin d, b vitamins.

I had to be careful with most digestive enzymes, they tend to burn, ouch!

 

Thanks again

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Fantastic thread. Thankyou for sharing your experience and thankyou to the repliers whose situations have improved!

I can safely I can now eat a lot more (foods and volume both! hehe)  but I forget that when I'm overwhelmed by what I still can't eat.

Hopefully our menus will expand further in time and while we wait, we get creative with the good stuff we CAN eat. :)

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I know this is an old thread, but this is worth a look. I have a long list of intolerances too, most are on this list:

"A subgroup of coeliac disease patients continues to experience symptoms even on a gluten-free diet (GFD). We attempted to determine whether these symptoms could be due to either cross-contamination with gluten-containing foods or cross-reactivity between α-gliadin and non-gluten foods consumed on a GFD. We measured the reactivity of affinity-purified polyclonal and monoclonal α-gliadin 33-mer peptide antibodies against gliadin and additional food antigens commonly consumed by patients on a GFD using ELISA and dot-blot. We also examined the immune reactivity of these antibodies with various tissue antigens. We observed significant immune reactivity when these antibodies were applied to cow’s milk, milk chocolate, milk butyrophilin, whey protein, casein, yeast, oats, corn, millet, instant coffee and rice. To investigate whether there was cross-reactivity between α-gliadin antibody and different tissue antigens, we measured the degree to which this antibody bound to these antigens. The most significant binding occurred with asialoganglioside, hepatocyte, glutamic acid decarboxylase 65, adrenal 21-hydroxylase, and various neural antigens. The specificity of anti-α-gliadin binding to different food and tissue antigens was demonstrated by absorption and inhibition studies. We also observed significant cross-reactivity between α-gliadin 33-mer and various food antigens, but some of these reactions were associated with the contamination of non-gluten foods with traces of gluten. The consumption of cross-reactive foods as well as gluten-contaminated foods may be responsible for the continuing symptoms presented by a subgroup of patients with coeliac disease. The lack of response of some celiac disease patients may also be due to antibody cross-reactivity with non-gliadin foods. These should then be treated as gluten-like peptides and should also be excluded from the diet when the GFD seems to fail."

NOTE: When you get to the web page linked blow, look for the "Download as PDF" link. The PDF has great detail.

http://www.scirp.org/journal/PaperInformation.aspx?PaperID=26626

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