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joshnjustinsmom

Questions For Those Who Have Btdt

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Hi Everyone!

I'm going to try and keep this as short as possible (I'm a very long talker lol). Recently my doctor (a new one to me due to insurance changes) has suggested that I have multiple food allergies and needed to start an elimination diet (wheat, corn, dairy). Past (and current) symptoms have been: abdominal pain (kind of raw feeling, and sharp pain), feeling like I'm going to pass out, GERD, general fatigue and malaise (varies by day), headaches, general aches and pains, brain fog--well, those are the biggies.

I was previously diagnosed with Fibromyalgia (which really I don't think fits me because my big complaint isn't pain, and the new doc agrees). I have so many allergies to environmental things that it would make your head spin, and apparently, my doc thinks I have some food allergy/intolerance as well. He sent me for a Celiac blood panel, and I've been referred to a gastro. I have a son with Autism, and one that is being evaluated for ADD and Dyslexia (doc also thinks food might be their issues too).

So here is my question after this brief background.... I did two weeks of wheat, corn, and dairy free (I made sure all was gluten free as well although I did eat gluten free oats from Red Mill), and had two (only two) days in which I felt remarkably well. Those two days I ate the same exact thing (chicken with red potatos, celery, green peppers, onion, and carrots). The following day I ate beans (a variety from a can) with chicken and onions (soup) and later felt really horrible and had terrible abdominal pain. I wondered if I was allergic to beans, and didn't eat it again, but I changed what I had been eating (added the oats back into the mix because I needed quick and easy one day). I never felt "great" after that (a few days) and then family came to town and we ate out a lot, and I ate whatever I wanted (including bread, etc.)

I understand that if someone had Celiac then they may not feel better for a while, but my question is....If I were Celiac wouldn't I have felt horrible after eating bread again? After the beans episode I didn't seem to recover, and honestly the eating out didn't make things any worse. Certainly not better, but not worse either.

Has anyone else had experience eating gluten free briefly and then consuming gluten? Is it even worth the Celiac testing if I didn't immediately feel "glutened" after the family eat free weekend (this was this past weekend btw)? gluten-free started November 29th and ended Dec 10th if that helps understand the short time frame. I should add that the Doc expected me to have lost about 5 pounds during those two weeks and I didn't lose an ounce!! He said it either meant that I cheated or was very creative with the food (neither of which is the case).

Any and all thoughts and input are appreciated!! Thanks in advance!

Heather


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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Yes you could still be celiac. We don't heal overnight and reactions can be delayed or vary. The gluten free diet is not a weight loss diet. I don't really understand why your doctor would have thought you would lose weight. It looks like the days you felt better you were eating whole foods and then you ate processed and felt worse. You may have inadvertantly eaten gluten in the tinned beans or soup. You should go with whole unprocessed foods for a couple of months and see how you are feeling then.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Yes you could still be celiac. We don't heal overnight and reactions can be delayed or vary. The gluten free diet is not a weight loss diet. I don't really understand why your doctor would have thought you would lose weight. It looks like the days you felt better you were eating whole foods and then you ate processed and felt worse. You may have inadvertantly eaten gluten in the tinned beans or soup. You should go with whole unprocessed foods for a couple of months and see how you are feeling then.

Thanks for your reply!! I guess I thought that I was eating whole foods (although when I used the tinned beans to make my chicken and bean soup I did question whether or not I should be doing so). I also used prepared, organic, supposedly gluten-free chicken stock every day, and for the first several days was using powdered or jarred, minced garlic (and some other spices). It looks like I need to change the way I look at everything, and not let anything touch my lips that I'm not positive about.

I also just read about cross-contamination from cookware and utensils, and this had not crossed my mind before either. I definitely have a lot to learn! :) Can you become glutened from preparing the meals of others (not gluten free meals) or washing the dishes of gluten containing foods? During the time that I started to feel really cruddy again I had also made my kids some mac and cheese (they had been eating the same things that I prepared on my elimination diet), and I helped a whole class of second graders with their bread-heavy meals at school (I sub).

The weight loss that he thought would happen was supposed to be because I would be eating healthier, and consuming fewer fat and calories. I am normally a sugar freak and eat a lot of processed, baked goods along with lots of butter on things. I'm not currently overweight though.

Thanks again for your help!


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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what is "Btdt" ??????


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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Does it mean Been there done that?

Hi cassP, welcome, I am new here to so I can't answer many of your questions.

I just had to say though... if celiacs could get me out of doing dishes due to cross contmination issues, that might be worth having to eat gluten free for the rest of my life, LOL! I hate doing dishes!

Amy in Alaska

what is "Btdt" ??????


Amy in Alaska

Gluten Hit Girl

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what is "Btdt" ??????

Yes, sorry. It is Been there done that.


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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Does it mean Been there done that?

Hi cassP, welcome, I am new here to so I can't answer many of your questions.

I just had to say though... if celiacs could get me out of doing dishes due to cross contmination issues, that might be worth having to eat gluten free for the rest of my life, LOL! I hate doing dishes!

Amy in Alaska

LOL Amy!! I was thinking more along the lines of having another reason to get the whole family to go gluten-free, but I'm thinking that I like your idea of not having to be the one to do dishes better! ;) I'd rather scrub toilets than do dishes!

Heather


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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I am very new here and still in the early stages of being diagnosed, but I did go and see a nutritionist/dietician last week and she said it can take up to 6 months to feel better if you are a Celiac!! She said she has known many people for whom it took 2 months to feel noticiably better most of the time! My understanding from what both she and my doctor said was that 1 month of perfect eating is the minimum I should give it before deciding that it isn't working because your body has to get used to the new way of eating and that in itself can make you feel rotten.

Also- if you "cheat" or come into some cross-contamination you could set yourself back completely in the early stages.

For me, I've been trying to eat this way only for a month. The first 3 weeks I was still sharing a toaster and a peanut butter jar with the rest of the family and was still eating dairy. After seeing the nutritionist on 12/7/10 and posting on here I bought a new toaster and cut out all sources of cross-contamination that I could find, cut out all dairy and also cut out coffee (I read that can be a problem for Celiacs as well, and let me tell you THAT was the most painful change I've made so far!!) and have felt GREAT the last almost 3 days!! I would also try to avoid eating out or any food you did not prepare because otherwise you will never know if it was the food you ate or if the diet isn't working for you.... eventually you can add eating out back in.

I know- these are huge sacrifices, I'm right there with you! But my desire to feel better and figure out what is wrong with me is tremendous and that helps a ton (as I look at the box of mint chocolates I just got from a co-worker for a Holiday gift that I can't eat because it has dairy in it.....)

Good luck,

Denise

Hi Everyone!

I'm going to try and keep this as short as possible (I'm a very long talker lol). Recently my doctor (a new one to me due to insurance changes) has suggested that I have multiple food allergies and needed to start an elimination diet (wheat, corn, dairy). Past (and current) symptoms have been: abdominal pain (kind of raw feeling, and sharp pain), feeling like I'm going to pass out, GERD, general fatigue and malaise (varies by day), headaches, general aches and pains, brain fog--well, those are the biggies.

I was previously diagnosed with Fibromyalgia (which really I don't think fits me because my big complaint isn't pain, and the new doc agrees). I have so many allergies to environmental things that it would make your head spin, and apparently, my doc thinks I have some food allergy/intolerance as well. He sent me for a Celiac blood panel, and I've been referred to a gastro. I have a son with Autism, and one that is being evaluated for ADD and Dyslexia (doc also thinks food might be their issues too).

So here is my question after this brief background.... I did two weeks of wheat, corn, and dairy free (I made sure all was gluten free as well although I did eat gluten free oats from Red Mill), and had two (only two) days in which I felt remarkably well. Those two days I ate the same exact thing (chicken with red potatos, celery, green peppers, onion, and carrots). The following day I ate beans (a variety from a can) with chicken and onions (soup) and later felt really horrible and had terrible abdominal pain. I wondered if I was allergic to beans, and didn't eat it again, but I changed what I had been eating (added the oats back into the mix because I needed quick and easy one day). I never felt "great" after that (a few days) and then family came to town and we ate out a lot, and I ate whatever I wanted (including bread, etc.)

I understand that if someone had Celiac then they may not feel better for a while, but my question is....If I were Celiac wouldn't I have felt horrible after eating bread again? After the beans episode I didn't seem to recover, and honestly the eating out didn't make things any worse. Certainly not better, but not worse either.

Has anyone else had experience eating gluten free briefly and then consuming gluten? Is it even worth the Celiac testing if I didn't immediately feel "glutened" after the family eat free weekend (this was this past weekend btw)? gluten-free started November 29th and ended Dec 10th if that helps understand the short time frame. I should add that the Doc expected me to have lost about 5 pounds during those two weeks and I didn't lose an ounce!! He said it either meant that I cheated or was very creative with the food (neither of which is the case).

Any and all thoughts and input are appreciated!! Thanks in advance!

Heather

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After seeing the nutritionist on 12/7/10 and posting on here I bought a new toaster and cut out all sources of cross-contamination that I could find, cut out all dairy and also cut out coffee (I read that can be a problem for Celiacs as well, and let me tell you THAT was the most painful change I've made so far!!) and have felt GREAT the last almost 3 days!! Good luck,

Denise

Denise, Congratulations, it sounds like you are doing well! Especially on giving up coffee. : )

I am not a coffee drinker but am curious, did the nutrionist mention soda at all? I am huge diet coke fan.

I just had my blood work done a few weeks ago and found out Friday it's most likely celiac (not my gallbladder like I thought it was).

I have to wait till January 15 to get my endoscopy and biopsy so they want me to eat normal till then. I don't even know how long it will take me to see the nutritionist! We are retired military so it just takes a while to get in. Luckily it didn't take me long to be diagnosed.

Amy in Alaska


Amy in Alaska

Gluten Hit Girl

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LOL Amy!! I was thinking more along the lines of having another reason to get the whole family to go gluten-free, but I'm thinking that I like your idea of not having to be the one to do dishes better! ;) I'd rather scrub toilets than do dishes!

Heather

Hi Heather, actually that's the deal my hubby and I have, I do bathrooms and he does kitchen and dishes. Although how it normally works is I do both a lot, LOL.


Amy in Alaska

Gluten Hit Girl

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I am very new here and still in the early stages of being diagnosed, but I did go and see a nutritionist/dietician last week and she said it can take up to 6 months to feel better if you are a Celiac!! She said she has known many people for whom it took 2 months to feel noticiably better most of the time! My understanding from what both she and my doctor said was that 1 month of perfect eating is the minimum I should give it before deciding that it isn't working because your body has to get used to the new way of eating and that in itself can make you feel rotten.

Also- if you "cheat" or come into some cross-contamination you could set yourself back completely in the early stages.

For me, I've been trying to eat this way only for a month. The first 3 weeks I was still sharing a toaster and a peanut butter jar with the rest of the family and was still eating dairy. After seeing the nutritionist on 12/7/10 and posting on here I bought a new toaster and cut out all sources of cross-contamination that I could find, cut out all dairy and also cut out coffee (I read that can be a problem for Celiacs as well, and let me tell you THAT was the most painful change I've made so far!!) and have felt GREAT the last almost 3 days!! I would also try to avoid eating out or any food you did not prepare because otherwise you will never know if it was the food you ate or if the diet isn't working for you.... eventually you can add eating out back in.

I know- these are huge sacrifices, I'm right there with you! But my desire to feel better and figure out what is wrong with me is tremendous and that helps a ton (as I look at the box of mint chocolates I just got from a co-worker for a Holiday gift that I can't eat because it has dairy in it.....)

Good luck,

Denise

Hi Denise!

It is nice to know that I'm not alone! Coffee? Really? That will be a toughie for me!! I guess I'll take that out as well. I have to say that I feel very similar to you...the desire to find out what is going on with me is greater than the desire to eat whatever I want. I will say though that I got rather frustrated in the two weeks that I was trying to eat properly because just when I would have a pretty good day I would have an equally horrible one. It really made me question whether I'm going down the right path. Having you (and others) reinforce that this can take a lot of time to start really feeling better, and knowing that accidental cross-contamination can make a huge difference as well I have found a refreshed sense of hope in eliminating these things from my diet. I just have to get over the mental hurdle of making sure that I am consistent and strict during the holidays when company comes since I'm more apt to want to cater to their dietary desires (not needs). Not eating out with company will be different for my family--we are all very food oriented, but I know it will have to be done until I figure this out.

I'm glad to hear that you are doing so well since you were able to fix the cross-contamination issues!! Thank you so much for your reply--you really have inspired me!!

Heather


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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Hi Heather, actually that's the deal my hubby and I have, I do bathrooms and he does kitchen and dishes. Although how it normally works is I do both a lot, LOL.

LOL--Somehow I think that agreement would end the same way in my house. There's no harm in trying though right? ;)


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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Coffee? Really? That will be a toughie for me!! I guess I'll take that out as well. Heather

You may be able to tolerate coffee. If you drink a lot cut it down perhaps to only in the morning but if it doesn't bother your stomach you don't have to delete it.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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thanks, lol... there's A LOT of these code words and i havent learned them all yet... and having TWO "DH"'s is a bit confusing


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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Hi JoshnhJustinsmom,

The problem with preparing gluteny foods for others is you can get gluten on your hands and then in your mouth if you eat something else with your hands. So be sure to wash up good before eating. Another problem is baking as the flours can get in the air very easily and float around and land in unwanted places like your food or the counter where you prepare your food etc. Nothing that would stop you from making gluteny foods, but you just have to get used to how to do it without cross contaminating yourself etc. Stirring a pot of regular noodles and then using the same spoon in a pot of gluten-free noodles would be a bad idear for instance.

I gave up coffee and tea myself, but I don't think most people need to. There are some flavored coffees and teas that have gluten though and they are a no-no. Like always, the rule is to check everything, and that means everything, that goes in your mouth before you eat it, drink it, chew it etc etc. Its too late at that point.

I was wondering about btdt too. Was thinking I would need to read up on some exotic new disease or something. BTDT symptoms are etc.. LOL :D


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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You may be able to tolerate coffee. If you drink a lot cut it down perhaps to only in the morning but if it doesn't bother your stomach you don't have to delete it.

Sorry for the late reply here--things have been crazy in my house the last couple of days with holiday company!

Honestly I'm starting to wonder if coffee isn't a culprit. Typically I feel really yucky after my first cup of coffee in the morning and start drinking tons of water afterward (don't really know if that helps), but I LOVE coffee....the taste, the smell, the warmth. I have GERD and I know that coffee irritates me in that way as well. It will probably be the most difficult thing for me to cut out of my diet, but I think it is time. I'm very grateful for your input about coffee! Honestly, although I know it makes me feel pretty cruddy I would never actually taken the plunge to delete it from my diet until you mentioned that it can pose problems for Celiac/Gluten Intolerant individuals. Thanks a million!


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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Hi JoshnhJustinsmom,

The problem with preparing gluteny foods for others is you can get gluten on your hands and then in your mouth if you eat something else with your hands. So be sure to wash up good before eating. Another problem is baking as the flours can get in the air very easily and float around and land in unwanted places like your food or the counter where you prepare your food etc. Nothing that would stop you from making gluteny foods, but you just have to get used to how to do it without cross contaminating yourself etc. Stirring a pot of regular noodles and then using the same spoon in a pot of gluten-free noodles would be a bad idear for instance.

I gave up coffee and tea myself, but I don't think most people need to. There are some flavored coffees and teas that have gluten though and they are a no-no. Like always, the rule is to check everything, and that means everything, that goes in your mouth before you eat it, drink it, chew it etc etc. Its too late at that point.

I was wondering about btdt too. Was thinking I would need to read up on some exotic new disease or something. BTDT symptoms are etc.. LOL :D

Thanks so much for your help! After I did some reading around here I realized that I might have been cc myself by using wooden spoons and non-stick cookware that have previously been used with gluten containing foods (washed afterward of course).

This is such a learning process with a huge curve it seems! I'm still trying to find out if you can get glutened from eating grain-fed chicken or beef. The last couple of days I've stuck with wild-caught fish and feel pretty good, while when I was eating chicken and beef I was beginning to be convinced that I was allergic or intolerant to anything because there seemed to be no pattern to what I was eating and how I felt. I know it will get figured out, but sometimes I feel like there must be an easier way! LOL Honestly, I don't know if I want my blood work and biopsy to come back positive so I know what the problem is and know how to fix it, or whether I want them to be negative because it would otherwise be such a pain to deal with family, functions surrounding food, learning how to eat out, and just plain changing the way I think about food (my family is and always has been food oriented).

Thank you to you (and everyone) for sharing your knowledge and being so helpful and comforting! I can only imagine that this process would be very confusing, frustrating, and difficult if it weren't for the internet allowing the connection of people. Regardless of my diagnostic and dietary findings, I feel very fortunate and blessed to know that I'm not alone in this, and I hope that with time and experience I can be just as helpful to everyone else as well!


Negative blood test Jan 2011

Awaiting Endoscopy results

(mis)Diagnosed with Fibromyalgia Aug 2008

Confirmed significant IgE mediated allergies to peanuts,soy,almonds,avocado,paprika,bell peppers,curry, lettuce, and beets (lower response to many more)

Suspected multiple food sensitivities/IgG mediated allergies

Two sons with suspected food allergy/intolerances or Celiac

Currently learning to be gluten-free

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