Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Do I Know What's Making Me Sick?


misdiagnosed6yrs

Recommended Posts

misdiagnosed6yrs Apprentice

I was diagnosed in August and for only the first few weeks did I feel good. I think now that I am eating less gluten, I am becoming more sensitive. It's the only thing I can think of. All the food I eat is gluten-free says the label, manufac, this forum.. etc..

What I need to know is when or how do I find out if I have a problem with other foods? I can't keep eating fresh fruit, tuna with mayo and eggs everyday.. so please tell me what to do now.

I am getting so frustrated and starting to not care anymore. I know I have to care but I've been sick for 7 years, I'm pretty used to it by now.

Sorry, Thats not true, It's getting much worse. In fact, almost unbearable.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



hathor Contributor

Since your foods are already restricted and you are suffering, I suggest an elimination diet. Here is one version, although I know there are others:

Open Original Shared Link

Check his list for foods that most commonly cause food allergies. You are regularly eating two (fish & eggs) and maybe three or four (if you are consuming citrus fruits and/or strawberries). Do you eat casein or soy?

I personally would get extremely ill if I was eating what you are eating. The eggs & the mayonnaise would do me in.

If you aren't up to a complete elimination diet, you could eliminate the most common problem foods, try it for a week and see if that does the trick.

misdiagnosed6yrs Apprentice
Since your foods are already restricted and you are suffering, I suggest an elimination diet. Here is one version, although I know there are others:

Open Original Shared Link

Check his list for foods that most commonly cause food allergies. You are regularly eating two (fish & eggs) and maybe three or four (if you are consuming citrus fruits and/or strawberries). Do you eat casein or soy?

I personally would get extremely ill if I was eating what you are eating. The eggs & the mayonnaise would do me in.

If you aren't up to a complete elimination diet, you could eliminate the most common problem foods, try it for a week and see if that does the trick.

:o

Wow, how overwhelming.

Yes I do eat casein and soy. The only thing I "dont" eat is gluten. Or so I think.

Why are eggs bad? Why is mayo bad? :huh:

I guess I can try the elimination diet but isnt there an easier way? Tests or something?

You also noted the common problem foods. How do I find out what those are?

Thanks for your reply

Bobbi

ruthla Contributor
:o

Wow, how overwhelming.

Yes I do eat casein and soy. The only thing I "dont" eat is gluten. Or so I think.

Why are eggs bad? Why is mayo bad? :huh:

I guess I can try the elimination diet but isnt there an easier way? Tests or something?

You also noted the common problem foods. How do I find out what those are?

Thanks for your reply

Bobbi

Eggs are a common allergen- they're "bad" if you're allergic to them.

Mayo contains eggs, and often soy oil.

frec Contributor

Hi--I'm sorry you aren't feeling better. One problem is that it takes a while for your intestines to heal. You might consider at least giving up dairy. Your intestines may still be too damaged to make the enzymes to digest the lactose in milk. There are lots of alternatives. You might avoid soy milk as a replacement though, because a lot of celiacs can't have soy either. Almond and rice milk are good.

There are blood tests, but I had to get them from a naturopath. That can get expensive if your insurance doesn't cover naturopaths. They can test for delayed reaction (IgG) food allergies and immediate reaction food allergies (IgE). As I recall my regular allergist only scratch tested for immediate anaphylactic type food allergies.

I agree that some sort of elimination diet would help you figure things out. They are kind of boring but once you feel better it is all worth it. Good luck.

Offthegrid Explorer

If you are eating only these foods and still getting sick, then you know you are intolerant to at least one of them. My first guess would be soy in the mayo. There *is* soy-free mayo. It's called Spectrum. It's quite expensive, however.

Second guess would be the eggs.

It is extremely frustrating to have so many intolerances. Right now I get sick if I eat soy, dairy (casein) or potatoes (and gluten of course). But there are other days when I have more minor symptoms and I don't know what I ate to trigger it. I often find that there was soy in something that I ate that I thought was safe.

Watch milk substitutes. Almond milk can have soy in it. I think rice milk is quite good, but be aware that Blue Diamond may have trace amounts of gluten in it.

misdiagnosed6yrs Apprentice
If you are eating only these foods and still getting sick, then you know you are intolerant to at least one of them. My first guess would be soy in the mayo. There *is* soy-free mayo. It's called Spectrum. It's quite expensive, however.

Second guess would be the eggs.

It is extremely frustrating to have so many intolerances. Right now I get sick if I eat soy, dairy (casein) or potatoes (and gluten of course). But there are other days when I have more minor symptoms and I don't know what I ate to trigger it. I often find that there was soy in something that I ate that I thought was safe.

Watch milk substitutes. Almond milk can have soy in it. I think rice milk is quite good, but be aware that Blue Diamond may have trace amounts of gluten in it.

I am going to try the elimination diet. I really don't want to but I know my insurance is terrible. So testing is out of the question for right now. Its so funny, I eat eggs everyday. I haven't eaten breakfast today cause I have no idea what to eat. Any suggestions?

I might just post a new topic for diet restriction meal suggestions.

Thanks everyone

Bobbi


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



hathor Contributor

The link I posted mentioned the common trigger foods. Many folks have casein and soy difficulties on this forum.

I know eggs are I problem for me because I get sick from eating them. The mayo would get me due to the eggs, any soy and probably the fat content too. I used to eat eggs all the time but found that I could tolerate them less and less. In the year before I was tested for antibodies, I probably only had egg hidden in a few desserts I had on special occasions and a trip to a crepes restaurant, but it was enough to cause my antibodies to be elevated. All those times I got sick, but it was probably confounded with the other stuff I ate at the same time.

Enterolab can test for casein, soy, egg, & dietary yeast problems. I tested for the latter three just curious as to my egg result (the tests are bundled). Oops, found out I was reacting to the other two as well.

I may react to other things but figuring it out can be difficult. Most things have multiple ingredients and it is hard to factor out possible cross-contamination, which meal contained the offender, etc. I keep a diet/symptom journal and keep trying to find the connections. I usually feel quite fine now, so I'm not desperate to go the full elimination diet route.

misdiagnosed6yrs Apprentice
The link I posted mentioned the common trigger foods. Many folks have casein and soy difficulties on this forum.

I know eggs are I problem for me because I get sick from eating them. The mayo would get me due to the eggs, any soy and probably the fat content too. I used to eat eggs all the time but found that I could tolerate them less and less. In the year before I was tested for antibodies, I probably only had egg hidden in a few desserts I had on special occasions and a trip to a crepes restaurant, but it was enough to cause my antibodies to be elevated. All those times I got sick, but it was probably confounded with the other stuff I ate at the same time.

Enterolab can test for casein, soy, egg, & dietary yeast problems. I tested for the latter three just curious as to my egg result (the tests are bundled). Oops, found out I was reacting to the other two as well.

I may react to other things but figuring it out can be difficult. Most things have multiple ingredients and it is hard to factor out possible cross-contamination, which meal contained the offender, etc. I keep a diet/symptom journal and keep trying to find the connections. I usually feel quite fine now, so I'm not desperate to go the full elimination diet route.

Is this some kind of chain of events? You find out you have a problem with gluten, then your body starts to react to all the others?

It seems no one is just Gluten intolerant. It's casein, soy, milk or corn. even worse, all of the above. Wha do you guys eat?

Haha Do I sound like a person you just told about celiac disease? How do you live without all those foods? It's true though, when you hear someone has all these different problems with food, you wonder. what do you eat?

OK, My point is... how common is it to start with celiac then find out soy is bad, milk is bad, eggs are bad... etc...

This is overwhelming

So much more than before.

Bobbi

blueeyedmanda Community Regular

I too suggest the elimination diet. This way you can pinpoint exactly what is the problem instead of continuing to suffer.

hathor Contributor

I don't know how common multiple problems are. Plenty of gluten-free cookbooks and products seem to contain the stuff that a number of us can't have <_< Of course, maybe those of us who have multiple problems end up having to talk about it all more :lol:

Actually I knew about my problems with egg, dairy and fat long before I realized the gluten problem, because my reaction is quicker and more dramatic. The soy thing caught me by surprise. I eliminated it from my diet following my test result just to see what would happen. The main thing I noticed is that a blemishes on my face I've been fruitlessly trying to get rid of, cover up, etc. for as long as I remember simply went away. Yeast? I don't notice anything if I eat it, although I've been largely staying away due to the test result. The score was so low I'm thinking it might be within the margin of error and I don't have a problem. At some point I am going to test that and see what happens. But I want to make sure I have everything else figured out first so the test will be accurate.

I think people sometimes do notice other foods bothering them once they eliminate gluten. I don't know that these are new problems, just the fact that the gluten reaction covered up the other reactions.

I get the "what do you eat?" question all the time because I'm vegetarian too. Fortunately I haven't noticed a problem with corn, other nongluten grains, potatoes, legumes or nightshade veggies (knock on wood). But really there are more foods I can eat than I can't and I have more recipes that I can ever possibly try (and constantly getting more "I need to check out sometime"). I've managed to find a number of local restaurants that have things I can eat. The biggest issue is when I travel. Like on the airplane (if I'm lucky) I can ask for vegan OR gluten-free. :(

gramma bea Newbie
:o

Wow, how overwhelming.

Yes I do eat casein and soy. The only thing I "dont" eat is gluten. Or so I think.

Why are eggs bad? Why is mayo bad? :huh:

I guess I can try the elimination diet but isnt there an easier way? Tests or something?

You also noted the common problem foods. How do I find out what those are?

Thanks for your reply

Bobbi

gramma bea Newbie
I was diagnosed in August and for only the first few weeks did I feel good. I think now that I am eating less gluten, I am becoming more sensitive. It's the only thing I can think of. All the food I eat is gluten-free says the label, manufac, this forum.. etc..

What I need to know is when or how do I find out if I have a problem with other foods? I can't keep eating fresh fruit, tuna with mayo and eggs everyday.. so please tell me what to do now.

I am getting so frustrated and starting to not care anymore. I know I have to care but I've been sick for 7 years, I'm pretty used to it by now.

Sorry, Thats not true, It's getting much worse. In fact, almost unbearable.

gramma bea Newbie

I can't tell you for sure if this really works, to find food sensitivities or not, as I am just starting to try it myself. I seen it on Dr Mercola's website. Before getting out of bed in the morning, take your pulse for 1 minute, then have a food that you want to test on the nightstand, without getting out of bed, or moving around too much, you place a small amount of the food under your tongue, leave for a minute, or two, then take out. Lay still for 20 minutes, retake your pulse. If it has risen by 5 beats or more, then that is a food that is offending you. I so far have tried 3 foods that I thought might be offenders, but no reaction at all. I won't know for sure if it works or not, until I have a reaction. <_< . The hardest part for me, is laying still for 20 minutes without falling back to sleep, so I can retake my pulse at the proper time. :lol:

misdiagnosed6yrs Apprentice
Hi--I'm sorry you aren't feeling better. One problem is that it takes a while for your intestines to heal. You might consider at least giving up dairy. Your intestines may still be too damaged to make the enzymes to digest the lactose in milk. There are lots of alternatives. You might avoid soy milk as a replacement though, because a lot of celiacs can't have soy either. Almond and rice milk are good.

There are blood tests, but I had to get them from a naturopath. That can get expensive if your insurance doesn't cover naturopaths. They can test for delayed reaction (IgG) food allergies and immediate reaction food allergies (IgE). As I recall my regular allergist only scratch tested for immediate anaphylactic type food allergies.

I agree that some sort of elimination diet would help you figure things out. They are kind of boring but once you feel better it is all worth it. Good luck.

Open Original Shared Link

sorry I did it wrong.

It does say cooked fruit I noticed. How the heck do you cook fruit?

hathor Contributor

I would google "cooked [name of fruit] recipe." Generally, you would cut it up, add a little water and then simmer on top of the stove, microwave, or put in a slow cooker or the oven.

You might ask on the McDougall board. There is at least one person regularly on the board who has done the elimination diet and there is one new person just starting it.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.