Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

misdiagnosed6yrs

How Do I Know What's Making Me Sick?

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites

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:

http://www.drmcdougall.com/med_allergic.html

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.

Share this post


Link to post
Share on other sites
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:

http://www.drmcdougall.com/med_allergic.html

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

Share this post


Link to post
Share on other sites
: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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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. :(

Share this post


Link to post
Share on other sites
: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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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:

Share this post


Link to post
Share on other sites
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.

Mcdougal

sorry I did it wrong.

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
  • Blog Entries

  • ×
    ×
    • Create New...