Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

First Set Back
0

13 posts in this topic

Hi everyone

 

Just a little one - and mostly my fault! I'm gluten-free, soy, dairy, and egg free.... I had been feeling so much better after 3 weeks. Got a positive diagnosis and came to terms with it. Finally had some new recipes to try! Frig full of food.... Much less nausea and feeling a little clearer. Was even getting some studying done again (woohoo)!!

 

Then I went to store.... hmm. Guess I am going to have to avoid that for a while longer!!! I was very careful about the gluten... but I bought some frozen dinners, some dips, some mixed salads. I tried some cheese. Felt ok, put some creamer (soy) in my coffee- just a little, and had something with soy... I know I know.... too much too fast. No sympathy needed - but wow. I guess I didn't really believe I could be eating one day just fine and the next day get sick. I thought the tests show it is gluten. How can all this other stuff be so bad too??!! I just can't wrap my head around the long list. I'm trying not to complain - I know so many people have longer lists!!

 

Anyway... I guess my reactions are a little delayed and probably cumulative. I guess that is something worth knowing. Worst stomach cramps - that's new! nausea and fatigue back, slept for hours.  And headache....raw throat from acid reflux.... back to bananas, carrots celery, hummus and chicken. Maybe rice. Not the worst thing in the world.

It's been about maybe a week, and I'm feeling better again except for fatigue....

 

I certainly don't deserve it I guess, but if you have any sympathy, or words of wisdom, thoughts about not eating the same 6 foods from now on, I'll listen <BG>.

 

I have also changed 2 meds. Checked on them - no gluten, but maybe they upset me anyway...doc changed the BP med for a 3rd time...sigh

 

Hope you are doing well and still getting answers!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

It  seems  strange  with foods  as we all are  so very different... buy  I  can  tell you soy  is a big NO NO  for me  &man others..its  like the plague  for me....

Also  I  sometimes  can eat  a  certain food  by itself  but  add  another  food  with it  & I'm  done  for , plain ill... so for  me  eating  one  gluten-free food at  a time   works  for some  food  items...I guess  the  combo  kills  my system....just  certain things.....

 

So  yes, in the  beginning  you  have  to play around  with   food  to see  what  your  body  will tolerate.. I  have  also  found  things  I loved  before  being gluten-free  I now  never  care  for...&  then  I like  things  I  would have  never  ate  when eating  gluten....

we  are  a  unique  group  of  people.....

feel better  soon....

0

Share this post


Link to post
Share on other sites

Thanks. I'm sure it was the combination of things of a few days. I wasn't careless. But I did want to know if the list was real... It is a big change to make otherwise. I even threw out the soup I had in the freezer. I don't remember when i made it and what broth I used. Hate to waste the veggies, but it is what it is.

 

I can tell already my tastes are changing... no desire for bread - but that may just be fear (shh don't tell)!

0

Share this post


Link to post
Share on other sites

So sorry. Most of the time it is safer to stick with those few safe foods you know are okay. Only try adding one new thing at a time and even then, be cautious. My son eats the same things over and over and he is able to function much better. Even being extremely careful he gets random intestinal cramps and misery. You'll adjust. It takes time to come to terms with the new normal for you.

0

Share this post


Link to post
Share on other sites

Hi Willow.

 

It seems to be more common than not that soy will bother people, celiac or not.  Also, have you considered that dairy is bothering you?  Many celiacs have to cut dairy out for some time until their intestines heal up.  Most will be able to have some amount of dairy after that.  Lactose intolerance is very common, again, whether celiac or not but I think the % is higher in celiacs because the same damaged villi are used for digestion.

 

Just some "food" for thought  :)

 

Colleen

0

Share this post


Link to post
Share on other sites




Hi Willow,

 

When our guts are damaged, they aren't going to react like normal, healthy, undamaged guts do.  For one thing, they can be sensitive and inflamed and that can cause problems.  Also all that disruption in the gut leads to upsets in the gut flora balance.  So we may react to foods that otherwise wouldn't bother us because our guts are basically a mess.  It can help healing if you treat your gut well for awhile.  Give it simple whole foods to digest, simple meals, without a lot of spices, less carbs, less dairy, etc.   Try some probiotics and digestive enzymes too.  Frozen meals are for people with healthy strong guts, not newly diagnosed celiacs.  As mother superior would say, wag-wag finger in your face! :)

 

You really do need to eat differently now if you want to heal your gut.  After 6 months or a year you may be able to branch out and add more complex foods to your diet without problems.  But you'll probably get to that point faster if you start out with a simple diet and avoid most processed foods.  Make it easy on your gut so your gut can make it easy on you.

0

Share this post


Link to post
Share on other sites

I just  wanted  to throw  another  tidbit  out  there.....some  people  eat  only the  same  foods  forever  with no problems  but  for  others  they  develop  vitamin &  mineral deficiency  &  also  food  deprivation  because  their  food  choices  are  lacking  in healthy  quality...so  if  you  plan  on  a  very limited  diet  for  a  long  period  make  sure  it  is  a  healthy  choice  &  not  just  a  calorie  laden  junk  food..( which by the  way  is  usually a  kid's  choice).

 every ones diet  needs    to be  a  great  variety  of  foods  not  just  processed  ...some  people  never  eat  fresh , live  foods....

1

Share this post


Link to post
Share on other sites

Hi everyone

 

Just a little one - and mostly my fault! I'm gluten-free, soy, dairy, and egg free.... I had been feeling so much better after 3 weeks. Got a positive diagnosis and came to terms with it. Finally had some new recipes to try! Frig full of food.... Much less nausea and feeling a little clearer. Was even getting some studying done again (woohoo)!!

 

Then I went to store.... hmm. Guess I am going to have to avoid that for a while longer!!! I was very careful about the gluten... but I bought some frozen dinners, some dips, some mixed salads. I tried some cheese. Felt ok, put some creamer (soy) in my coffee- just a little, and had something with soy... I know I know.... too much too fast. No sympathy needed - but wow. I guess I didn't really believe I could be eating one day just fine and the next day get sick. I thought the tests show it is gluten. How can all this other stuff be so bad too??!! I just can't wrap my head around the long list. I'm trying not to complain - I know so many people have longer lists!!

 

Anyway... I guess my reactions are a little delayed and probably cumulative. I guess that is something worth knowing. Worst stomach cramps - that's new! nausea and fatigue back, slept for hours.  And headache....raw throat from acid reflux.... back to bananas, carrots celery, hummus and chicken. Maybe rice. Not the worst thing in the world.

It's been about maybe a week, and I'm feeling better again except for fatigue....

 

I certainly don't deserve it I guess, but if you have any sympathy, or words of wisdom, thoughts about not eating the same 6 foods from now on, I'll listen <BG>.

 

I have also changed 2 meds. Checked on them - no gluten, but maybe they upset me anyway...doc changed the BP med for a 3rd time...sigh

 

Hope you are doing well and still getting answers!!

I've had issues 3 times since being diagnosed in January. The first 2 times I had eaten out and I'm fairly sure I was glutened. The third time I just don't know. But I went back to eating 6 things...chicken, rice, bananas, berries, potatoes and sweet potatoes. Then after a couple of days I added carrots and asparagus. Then the next day added another 1 ingredient food. All the while keeping a food diary...tracking food and symptoms. Everything was good until I added my first non 1 ingredient food...A homemade bread. So...I'm thinking one of the ingredients in there is bothering me.

I guess my long winded point is that you should try to add in a food or 2 a day and keep it written down. See if something strikes you as an issue. It does seem like a lot of celiacs have other food sensitivities as well. I'm not sure why. Isn't the gluten thing enough? Lol.

0

Share this post


Link to post
Share on other sites

Thanks for all the advice. I found one source of soy I thought I had already rooted out! I checked the supplements I have - But doc told me to double the omega 3. So I opened the other bottle I had in back of cabinet. I didn't realize it was a different brand... Duh!! :(   It has soy. And it doesn't say gluten-free. Just when I thought I was so careful and had things figured out. I am my own source of poison. Last 3 of 4 days have been getting worse. I was ready to try and give up food! And it took me 4 days to find this. How could I be so stupid! I was taking 2 per day. I feel like back at day 1. I thought I was reading every label 3 times. guess I missed one :(

 

 

I did keep a food diary the first 2 weeks. Guess I'll go back to what I was eating. Banana for breakfast. Carrot, celery, or peapods and hummus for lunch, chicken and zucchini for dinner.  And popcorn or apple for snack....

 

Thanks for the good information from everyone - I appreciate your thoughts. This started out easy and got harder. Not sure why. Maybe because I got too confident.... or because I only started with just a few foods for the first couple weeks.

0

Share this post


Link to post
Share on other sites

I have no idea why a doctor would prescribe omega-3 supplements unless he was trying to give you some sort of placebo effect. 

A much better way to get the nutrients would be to eat fish, nuts, flax seeds, and leafy vegetables and to use vegetable oils. 

Recent studies of omega-3 have disputed the heart-health benefits that previous studies had purported. Omega-3 has zero effect on heart attack risk, or arterial plaque and does not lower blood pressure. 

But some of the side effects of too much omega-3 supplements include your body not being able to regulate blood sugar, high blood pressure, and depression. Not to mention that fish-based supplements are destroying fish populations on the East coast due to overfishing of small-fish species. 

I'd start questioning your doctor's advice and do some more research into anything that you've been taking.
 

0

Share this post


Link to post
Share on other sites

Thanks for all the advice. I found one source of soy I thought I had already rooted out! I checked the supplements I have - But doc told me to double the omega 3. So I opened the other bottle I had in back of cabinet. I didn't realize it was a different brand... Duh!! :(   It has soy. And it doesn't say gluten-free. Just when I thought I was so careful and had things figured out. I am my own source of poison. Last 3 of 4 days have been getting worse. I was ready to try and give up food! And it took me 4 days to find this. How could I be so stupid! I was taking 2 per day. I feel like back at day 1. I thought I was reading every label 3 times. guess I missed one :(

 

 

I did keep a food diary the first 2 weeks. Guess I'll go back to what I was eating. Banana for breakfast. Carrot, celery, or peapods and hummus for lunch, chicken and zucchini for dinner.  And popcorn or apple for snack....

 

Thanks for the good information from everyone - I appreciate your thoughts. This started out easy and got harder. Not sure why. Maybe because I got too confident.... or because I only started with just a few foods for the first couple weeks.

I'm sorry...it's hard to find out you're doing it to yourself.  You work so hard and it can be one thing... and it throws you off.  I also found it easier at first...struggling the past month...diagnosed in January.   

0

Share this post


Link to post
Share on other sites

I have no idea why a doctor would prescribe omega-3 supplements unless he was trying to give you some sort of placebo effect. 

A much better way to get the nutrients would be to eat fish, nuts, flax seeds, and leafy vegetables and to use vegetable oils. 

Recent studies of omega-3 have disputed the heart-health benefits that previous studies had purported. Omega-3 has zero effect on heart attack risk, or arterial plaque and does not lower blood pressure. 

But some of the side effects of too much omega-3 supplements include your body not being able to regulate blood sugar, high blood pressure, and depression. Not to mention that fish-based supplements are destroying fish populations on the East coast due to overfishing of small-fish species. 

I'd start questioning your doctor's advice and do some more research into anything that you've been taking.

 

My inflammation from the blood tests that were run were off the scale high and 50% higher than 2 years ago (I had surgery 2 years ago and they were expected to be high then). It's higher now with no explanation (except Celiac, but I'm sure I had it then too) It's an OTC, not prescription. I talked to my mom about it - she has Rheumatoid arthritis and her meds are stripping it from her body and she is taking 8 or 9 times the amount I am by prescription. But she is monitored.

 

I normally eat lots of green leafy veggies, and nuts like almonds, but dislike fish. I'll eat tuna once in a while. If you know of a source of Omega 3 supplement that's nonfish let me know, that would be great. But I am not getting enough in diet.

 

You don't take it for blood pressure or heart risk, but for inflammation and joints. and because mine was measured low, along with vit d, b and something else I forgot right now....

 

My doc doesn't recommend placebo medication. My iron and ferritin levels are also a little low. He said do not start taking anything yet. Let wait til you heal some and test it again in 6 months. Thanks for the concern though.

 

thanks

 

edited to show - He did say if it drops anymore, I'll need prescription. Some of the inflammation is coming from damage in esophagus shown in biopsy.

Edited by Wi11ow
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined