Jump to content
  • Join Our Community!

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

PreOptMegs

Specific Carbohydrate Diet?

Rate this topic

Recommended Posts

I was getting worried because he said he would call me with results and I didn't hear from him...it turns out that first biopsy report said the growth was benign, but he said he had "another case like mine" and had it rechecked and that's why it took so long to get back to me. The second report came back with pre-cancerous cell changes. He's having it looked at again just to be certain--I see him on Monday to hear the results of that and find out what comes next. He's already told me that if it's precancerous it has to come out, but that he can't do that kind of surgery because it involves the ducts...so I guess he'll be referring me to a surgeon. Anyway, I do really like him.

I hope everything goes well on Monday. I think you are in good hands with him. I really feel I can trust him. My other doctors from Kaiser were nothing like this so I'm still kind of shocked when I see him and he is so thorough. When I was really sick and could hardly stand (pre gluten-free) I was begging Kaiser to send me to Stanford or Davis or *anywhere* since they werent able to figure anything out. Now that I'm doing so much better and not even trying to see any specialists Dr. R. says he's sending a referral to Stanford to see this Celiac doctor. :blink: Totally blows my mind. I wish I would have been seeing him back when I was sick...maybe I could have been properly diagnosed.

Also on the CT scan they saw a cyst or something on my ovary....I guess this is usually not serious but they told me to have my primary look into it. I havent done anything about that yet but he brought it up and asked if I'd taken care of it. Another shocker for me. I'm telling you I've never had this kind of care before.

He also wants to see me again after I go to Stanford to discuss what the specialist had to say. I'm really glad I found this GI and I'm glad for you as well. Keep us posted on how things go.

Share this post


Link to post
Share on other sites

It is so great to hear how much cutting out corn has helped everyone. I am still struggling to find things to eat without it. What has everyone been eating? Any suggestions?

Miamia

I hope everything goes well on Monday. I think you are in good hands with him. I really feel I can trust him. My other doctors from Kaiser were nothing like this so I'm still kind of shocked when I see him and he is so thorough. When I was really sick and could hardly stand (pre gluten-free) I was begging Kaiser to send me to Stanford or Davis or *anywhere* since they werent able to figure anything out. Now that I'm doing so much better and not even trying to see any specialists Dr. R. says he's sending a referral to Stanford to see this Celiac doctor. :blink: Totally blows my mind. I wish I would have been seeing him back when I was sick...maybe I could have been properly diagnosed.

Also on the CT scan they saw a cyst or something on my ovary....I guess this is usually not serious but they told me to have my primary look into it. I havent done anything about that yet but he brought it up and asked if I'd taken care of it. Another shocker for me. I'm telling you I've never had this kind of care before.

He also wants to see me again after I go to Stanford to discuss what the specialist had to say. I'm really glad I found this GI and I'm glad for you as well. Keep us posted on how things go.

Share this post


Link to post
Share on other sites
Guest Robbin

I know I can't eat corn anymore, and have had a lot of problems with the xanthan gum (it even caused my hands to burn and swell when I spilled some) but, I am wondering about the connection with corn? Is it grown on corn? I missed that part in the thread and can't find it :blink:

Share this post


Link to post
Share on other sites
Julie,

OMG.... Back in December I discovered those tortillas and started eating them everyday for a couple weeks. I got so much sicker but I was always sick so couldnt tell what was what but I stopped eating the tortillas. I actually returned an unopened package to the store cuz I just didnt want to eat them anymore. They were good though and I was sad about not being able to eat them....I thought it was something in the oils they used.

Since finding out about corn I've checked out all the stuff I used to eat that gave me reactions and every one of them conatined corn in some form or another. I really react to xanthan gum. It was a reaction to that particular ingredient (in a cake mix) which got me thinking and made me go back and reread Simply's V's post about corn.

I think the tortillas are about the only thing I hadnt went back and looked at the ingredients on....I always do this when I'm shopping. :rolleyes: I've found corn in everything so far but I dont remember seeing xanthan gum when I bought those tortillas...of course I wasnt concerned about corn at the time but I always check ingredients anyway. Is there really Xanthan gum in them cuz that would explain why I got so much worse? I was eating them on Christmas and I got really brain-fogged and the usual headache with veins throbbing. I was getting migraines while I was eating the tortillas but never once suspected them as being the cause. I also got a migraine after eating the cake with xanthan gum in it 3 weeks ago. I got MAJOR symptoms from that cake but probably because the only corn I was getting at the time was in my thyroid pills.

omg Rachel, yep it probably was the xanthan gum. I have a package in front of me and here are the ingredients exactly as they read:

Brown rice flour, Filtered water, Tapioca flour, Safflower oil, Rice bran, Vegetable gum (xanthan, cellulose), Sea salt

I think xanthan gum is a real problem, it is in everything, and especially in health food products and products catered towards allergic/sensitive individuals.

I know I can't eat corn anymore, and have had a lot of problems with the xanthan gum (it even caused my hands to burn and swell when I spilled some) but, I am wondering about the connection with corn? Is it grown on corn? I missed that part in the thread and can't find it :blink:

Robbin, I'm not exactly sure but xanthan gum is either derived from corn or somehow corn is used in its manufacturing process.

It is so great to hear how much cutting out corn has helped everyone. I am still struggling to find things to eat without it. What has everyone been eating? Any suggestions?

Miamia

miamia, I'm still learning about what to avoid. Basically I am just eating fresh fruit (waxy skins peeled), vegetables (waxy skins peeled), meats, and avocadoes and olive oil until I figure it all out.

Share this post


Link to post
Share on other sites
I know I can't eat corn anymore, and have had a lot of problems with the xanthan gum (it even caused my hands to burn and swell when I spilled some) but, I am wondering about the connection with corn? Is it grown on corn? I missed that part in the thread and can't find it :blink:

Robbin, I believe its grown on corn. I think yeast is grown on corn too. I've read so much in the past 2 weeks its hard to remember everything but I think thats what the deal is with xanthan gum.

Brown rice flour, Filtered water, Tapioca flour, Safflower oil, Rice bran, Vegetable gum (xanthan, cellulose), Sea salt

I think xanthan gum is a real problem, it is in everything, and especially in health food products and products catered towards allergic/sensitive individuals.

Thanks for the ingredients. See how easy it is to miss things when you don't really know what the heck you're trying to avoid in the first place! :lol:

Yeah...it is in everything made for the gluten free diet. No wonder I could never eat a regular gluten free diet. :(

I kept telling my doctor "Am I ever going to eat a regular gluten free diet? What gives...am I going to have to eat meat and vegetables forever?" I thought I just coudnt handle any processed foods because of chemicals or preservatives or whatever. I hate xanthan gum. I cant eat Pamelas cookies. :angry:

It is so great to hear how much cutting out corn has helped everyone. I am still struggling to find things to eat without it. What has everyone been eating? Any suggestions?

Miamia

Like Julie, I'm still trying to figure everything out. Ive been making pancakes alot. I eat tinkyada pasta, potatoes, a tiny bit of fruit, fresh meat from whole foods, fish, Dagoba chocolate, rice, amaranth cereal, tapioca pudding, some vegetables. Not a huge variety yet.

Share this post


Link to post
Share on other sites
Guest Robbin

Wow, it's like a vicious, never-ending circle-gluten, corn, yeast, xanthan gum. I wonder if the cause could be from contamination with other grains' pollen and it all goes back to gluten/wheat? Maybe the whole green world is contaminated with the stuff. Ok, I am getting really depressed.....maybe carried away, but it is sooooo frustrating just trying to be well enough to have a life. Thank God for this forum, because everyone else thinks I am a nutcase now with the food intolerances.

Share this post


Link to post
Share on other sites
Jersey,

Just recently I started having problems with acid reflux. I dont remember having it before...or at least not this bad. I got it really bad when I ate the cake I just posted about and a couple other times when I messed up on my corn diet. I was asking about GERD on JnkMnky's thread about it...I didnt know if thats what I had but it was a burning pain in my chest and in my throat. It was way worse if I bent over. It was like a really full feeling in my chest and throat...I was also really bloated...it kind of hurt to breathe. Is this GERD? Anyways it hasnt happened again since I've been doing well on the diet. I mentioned it to the GI and he was gonna give me a medication (I think it was Nexium or something like that....started with an N??). I told him I dont want any medicines and I dont need any as long as I dont eat corn. Besides I'm sure the medicine has corn in it!! Does what I described sound like GERD or acid reflux? Are they the same thing or 2 seperate things? :unsure:

Rachel--What you described is acid reflux. The difference between acid reflux (or acid indigestion) and GERD is the frequency. If you get it more than twice a week, and it's persistant, they call it GERD. This can cause damage over time. Since it happened to you, but hasn't happened again, I think the prescription meds are way too much. As I posted, I had major side effects from the Prevacid (including vertigo). :blink::D

Share this post


Link to post
Share on other sites

I am so this post was started as well it is such a relief to hear people who sound like me. It is so hard to have food allergies especially multiple ones!!! Sometimes I see people in restaurants or just grabbing abite to eat and I cannot even contemplate what that would be like anymore. Its crazy to think they don't realize how lucky they are!!!

I have had a history of GERD and I really believe like IBS and so many othere commonly diagnosed illneses it is just a symptom of something else. They put me on nexium and kept me on it for years I finally got off of it and never ever will take anything like that again. Those drugs are so bad for you they stop you from producing the acids that are not only bothereing you but the ones you need for digestion. So Rachel your instinct was right. STAY AWAY!!

I have a hard time with brown rice so I have been eating millet and white rice I still know I must be getting corn I am going to really go through what I ma eating and try to figure it out. The problem for me at this point is that my digestion is so compromised and my malabsorbtion isssues are so bad from being misdiagnosed for so long I have problems digesting nearly everything- even things I know I am not allergic too .

Everyones symptoms sound so familar to mine though the bloating the fos its like reading one of my journal entries. Its so nice to hear in one way and then I also hate that everyone is feeling so bad.

Miamia

Share this post


Link to post
Share on other sites
I hope everything goes well on Monday. I think you are in good hands with him. I really feel I can trust him. My other doctors from Kaiser were nothing like this so I'm still kind of shocked when I see him and he is so thorough. When I was really sick and could hardly stand (pre gluten-free) I was begging Kaiser to send me to Stanford or Davis or *anywhere* since they werent able to figure anything out. Now that I'm doing so much better and not even trying to see any specialists Dr. R. says he's sending a referral to Stanford to see this Celiac doctor. :blink: Totally blows my mind. I wish I would have been seeing him back when I was sick...maybe I could have been properly diagnosed.

Also on the CT scan they saw a cyst or something on my ovary....I guess this is usually not serious but they told me to have my primary look into it. I havent done anything about that yet but he brought it up and asked if I'd taken care of it. Another shocker for me. I'm telling you I've never had this kind of care before.

He also wants to see me again after I go to Stanford to discuss what the specialist had to say. I'm really glad I found this GI and I'm glad for you as well. Keep us posted on how things go.

I do feel I can trust him too...none of my previous doctor's have been like him, but I've been having similar good experiences with other doctors in his group. So far I've seen an ENT, an Internist and now him and they all have given me surpurb care...beyond what I thought was normal because no doctor has really ever done that. I did have to laugh when after the biopsy of my small intestine came back with no damage and he declared "you don't have Celiac", lol. Actually though, I really never thought I DID have it because I've never had the true malabsorbtion problem most people have...I do have undigested food once in a while, but my blood counts always come back normal and I never lost weight or anything. So, I've always kind of thought it was intolerance anyway.

I'd take care of the cyst thing...even benign cysts can grow. They are much easier to deal with when they are small. So does this mean you don't have to have the second colonoscopy?? :)

Share this post


Link to post
Share on other sites
So does this mean you don't have to have the second colonoscopy?? :)

I don't have to do it now. :D

He feels its not necessary plus I don't wanna go through it again.

Share this post


Link to post
Share on other sites
I don't have to do it now. :D

He feels its not necessary plus I don't wanna go through it again.

YAY!!!! :D I don't have to have another for 10 years! Woohoo! :D :D :D

Share this post


Link to post
Share on other sites

Hi everybody,

I've made major mistakes the last few days and I've been soooo sick. After my Cinco de Mayo corn fest, I kept eating foods to to test my system, I had only been eating fruit, veggies, and meat and I need more to eat -I'm hungry, like Chris Farley H -U -N -G -R -Y. So, it turns out there is corn starch in these crackers I ate that I get from a local gluten free bakery, I made a cheese dip to dip them into, and I also tested Pamela's cookies (some people seem to tolerate them as corn free even though they have the dreaded xanthan gum, I hate xanthan gum) and haagen dasz vanilla bean and chocolate peanut butter ice creams (no corn syrup listed on either). My mouth is covered with open sores, blisters, it's like they ripped all the tissue inside my mouth apart. My ear drums are swollen, I am retaining so much water retention in my whole body I gained literally 15 pounds. I'm totally bummed. I know corn is a real problem for me but I think I still have a lot of other food allergies/intolerances/sensitivities along with it. It's so hard to figure it all out, and to figure out what to eat. And when you are hungry you gotta eat. Oh well, I'm just venting....

Anybody know what to do to get the water retention down?? Mine never goes away quickly unless I take all offending allergens out, and even then it takes several days.

Share this post


Link to post
Share on other sites

I've found that if the edema is from a sensitivity, like milk, it takes almost a week to disappear on its own. I suspect that antihistamines would chase it.

But if it's caused by salt and inactivity (as on an airplane), raw pineapple or watermelon seems to flush it.

Share this post


Link to post
Share on other sites

Well, I started my corn-free quest yesterday and so far so good. I attended two birthday parties on Saturday (one reason why there wasn't a point to starting then, lol), and ate SOMETHING that totally bloated me up. I gained two pounds overnight. I think eating corn-free yesterday kept all offending villans out so I lost that extra weight today. One bummer...I was all set to eat some shrimp tonight for dinner (TJ's Frozen Shrimp) fortunately I looked at the ingredients first because SALT was listed in the ingredients...who knew.

I am really bummed though because I had my follow-up with my GI today...I know nothing more than I did before I went in. The results from the biopsies weren't in yet, grrrr. In addition to that, he was trying to make me feel better by telling me that my pre-cancerous cells might really just be "irritation". So I was asking what might cause that, and somehow we got on the subject of my abdominal pain and the bad burning I've had in the middle of the night. He said, "well that might be it". Um, gosh, I've told him about that before and in fact that's why I was taking Prilosec OTC. He wants me to continue taking it for two months and at that time he'll do another endoscopy and take more biopsies. I'm really worried about taking Prilosec for that long...I'm pretty sure it has corn in it. Maybe if that's ALL I have to take it won't be so bad. I've tried to cut out as much as I possibly can. The only thing I haven't replaced are my facial products, hair products, etc. But I did buy some Silly Strawberry toothpaste, lol.

I will say that I didn't have any gas yesterday, which was really NICE! :) NO gas to speak of today either, so, hopefully I'm on the right track with this whole thing.

Share this post


Link to post
Share on other sites

Wow! I haven't been keeping up, but it seems like everyone is having a problem with corn! It's like another epidemic, like gluten!!! Well, I was doing so well, and then yesterday I got my 'monthly friend' and had THE WORST CRAMPS EVER and I had a final at school and knew it was going to be a problem trying to concentrate when all I wanted to do was crawl up in a ball and lay down. So I took some alieve. Well, of course last night I was up with heartburn again......I haven't had it in so long so it was so weird.....(well, a couple weeks is long for me to have no symptoms). Anyway, another day I tried taking an acidopholis and I was up that night too with HORRIBLE stomach pains, in the upper area like below my breastbones. But other than these two times that I took supplements, I've been perfectly fine. It's just insane that such a little amount could kill me so bad. Now I know why I was always in so much pain before considering I was eating deriatives from corn all day long!

Anyway, another thing that I've noticed when I have something with corn in it is I gain like 4lbs overnight! This is insane! Does anyone else get this?

Share this post


Link to post
Share on other sites

I one time gained 12 lbs after a gluten escapade the day before, so I understand how 4 lbs overnight is definately not unreasonable, but it definately sounds like you can't tolerate corn!!!

Share this post


Link to post
Share on other sites

Pre-Opt on April 17 you said:

"The main argument was that the body was not getting enough short chain fatty acids in the diet because these are mostly found in starchy vegetables and the doctors said that long term effects without SCFA could potentially be bad..."

Can you tell me who or what you were responding to?

Thanks,

Jack - sorry if this post doesnt display right.

Share this post


Link to post
Share on other sites

JACKMAT---

On page 11, greengirl posted an article written on the SCD. I read it and researched its thoughts on the negative parts of the diet. I found their negative claims to be false.

Share this post


Link to post
Share on other sites
. What about nutritionists, has anyone had any luck talking with them? I have never seen one but was thinking about it.

I used a nutritionist who sepcializes in the gluten-free diet. It didn't work for me, since she asked me to add all sorts of gluten-free grains into my diet. (I cannot tolerate corn, amaranth, buckwheat, quinoa, etc). I got sicker and sicker and gained a lot of weight and had a lot of medical side-effects. I really don't know what it is about nutritionists that they think we all need to eat grains? Both the PALEO diet book and Elaine's book talk about how difficult it is for us to digest grains, especially after years of damage to the intestines.

I finally found a naturopathic physician this spring who 'gets it' about digestive disorders and realizes the problems of lack of proper enzymes, intestinal permeability, etc. I went on strict PALEO diet for a while (which I had done 2 years ago very successfully for about 4 months) and now have begun the SCD diet. I have lost about 5 pounds in the past week and 5 more during the previous 2 weeks. My stomach is calmer than ever on the SCD. I am amazed, frankly. I don't remember feeling this good in my gut. I am not hungry, either, since the diet is so high in protein (just like paleo).

Kathleen

gluten-free diet 2.5 years

Paleo diet - on and off for past 2 years

SCD diet - started May 2006

Share this post


Link to post
Share on other sites

I just had to re-start the diet after cheating (which I had never done before). I just got sick of others around me eating cookes/cake, so I ate one too many M&Ms. Felt awful, wasn't worth it!

Share this post


Link to post
Share on other sites

An update. I've now been on the SCD for 4 months. I'm completely off all anti-diarrheals and my weight has finally stabilized. I can now tolerate all well-cooked non-starchy veggies and all well-cooked fruit including berries. Meat, fish, eggs, raw bananas, avocados and FINALLY almond and pecan butter are okay too. I'm eating about 3 jars of almond butter a week - it's so addictive and maybe I can finally starting gaining some weight back. Pretty soon, I'm going to start trying some easy to digest fresh fruit and veggies.

Share this post


Link to post
Share on other sites

Corinne that is FANTASTIC!!!!!! Great job!

Megs - good for you for starting over and figuring out that it isn't worth it. I did something similar this last week by eating 6 Hershey's kisses...felt awful for a couple of days afterwards.

Share this post


Link to post
Share on other sites
Guest greengirl
How are the diets going? I haven't heard anything in a while!

Well, I stopped after 6 weeks. I was feeling weak and even out of breath when I climbed the stairs. Plus, I had burning pain a lot in my abdomen. The amazing thing is, when I went back to gluten free foods, I could tolerate everything better than before I started SCD. That tells me that it was effective and I feel it jumpstarted my healing. I have more energy now and the burning pain is gone.

I went hog wild the first few days back on gluten-free foods! I couldn't wait to eat baked potato, corn on the cob, and gluten-free baked goods. I do try to limit gluten-free breads, treats, and sugar now though. I just don't feel good when I eat too much of it. And I'm limiting dairy, as well.

One negative thing that came out of the diet is that I don't seem to be able to tolerate almonds anymore. I think I ate so many almonds during those 6 weeks (it's in all the scd recipes!) that even the thought of almonds makes me feel sick! Hopefully this is just a passing intolerance, but it does seem that too much of anything is not a good thing!

Hope others are having success!

Christine

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

    • May 22, 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
    • June 01, 2019 Until June 02, 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 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...