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jerseyangel

"Super Sensitive" Celiacs.....

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Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any cashew butter that I now trust to be OK, so I just do without. I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it. :)

That sounds like a good plan :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I'm a super sensitive celiac too. It really sucks ... I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now. Of course I ate it for 4 days straight so that didn't help. <_<

I just wanted to pass on what the dietician at the support group I visited last night said regarding oatmeal. Take it for what it's worth, it may or may be true for you.

She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.

That's interesting. Oats were the first thing I ever reacted to. Way back in high school I was made to eat oatmeal porridge for breakfast and would end up in the loo sometime during the morning doubled over with cramps.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

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That's interesting, I could never eat oatmeal, it made me gag. I always thought it was because of the lumps, hate lumps. :lol:


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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The oats went down really well. They gave me a full calm feeling in my stomach that I'm not getting from the other foods I'm eating. I'm mostly Paleo so I'm mostly eating meats, fruits and veggies.

I know I overdid it though ... I've always like the taste of oatmeal.

Good tip on the Sunbutter. I have soy issues too but forgot about it when I was eating this.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I bought a box of Cream Hill Estates Oatmeal weeks ago and have just been afraid to try it. (I was feeling optimistic in the store, I guess!)

I used to love oatmeal, but did notice that I was in the bathroom more on the days I ate it. I keep wondering if I've healed enought to handle it......but what Liz's dietitian said makes sense to me too. I have problems with so many of the plant proteins.

I think my husband may inherit my "pure" oats :rolleyes:


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Does anyone know of a large scale study for oat tolerance? Or how the only 10% react phrase came about? Most of the studies I've read are rather small (10, 39, etc. people) and seem to have a more than 10% dropout rate due to adverse reactions. I've been wondering about this for some time and thought I would ask.


---------------------------------

MP - celiac for 10 years

 

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It could be the fiber in the oats too. I have a few freinds who use oats as a laxative. Flax meal is good for this too.

I started on the oats because I wanted to make oatmeal choc chip cookies for a celiac mtg. I used Bob's choc chip cookie mix and this and it turned our really well .. be sure to add some water too. I used 6 tblsp ...

Then I just got carried away.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I've always disliked oatmeal. I thought it was because we had to sit at the table until we ate it as kids. Nothing worse than cold, solidified oatmeal.... I DID like oatmeal cookies, though!

I tried oatmeal just once since my diagnosis. Can't do it. Oh well.


GOD IS GREAT, GOD IS GOOD, THANK YOU FOR OUR GLUTEN-FREE FOOD!

MUSIC IS THE BREATH OF LIFE

Theresa

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Well, it certainly made me wonder if I reacted to the oats themselves, or if they were contaminated, as I suspected at first. At any rate, I used them all and doubt I will buy more.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Well, it certainly made me wonder if I reacted to the oats themselves, or if they were contaminated, as I suspected at first. At any rate, I used them all and doubt I will buy more.

I read the about 5% of celiacs react to the gluten like protein in oats. I am one of them. I ate a serving of Bobs oats and was sick for a couple of months. That wouldn't be from cross contamination. Plus, Bobs wouldn't be that contaminated. That makes me unable to eat anything processed in a facility that processes oats too. And that isn't listed on the label. I have to go through the company's products to see if any of them are oat containing.

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I am new to this list and posted this morning about an accidental ingestion of gluten. I was diagnosed with Celiac Disease about 18 months ago and have since followed a very rigid gluten-free diet. On New Year's Eve I had ate aomething with gluten in it and have had D since despite monitoring my diet. After reading your posts, it seems that the accidental ingestion and severe sensitivity could have triggered something else - like sensitivity to other things like milk or soy. I appreciate anyone's opinion!

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Woodrow, have you been back to your doctor to have your Celiac blood panel monitored (since you were diagnosed)? That may help you understand if you still have gluten damage.

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Woodrow, have you been back to your doctor to have your Celiac blood panel monitored (since you were diagnosed)? That may help you understand if you still have gluten damage.

No, I haven't. Is that something that should be done on a regular basis? I am so new to this.....HELP!

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My doctor has been doing blood panels....checking nutrient levels about every 6 months. It's nice to know whether you are healing and starting to absorb nutrients.


GOD IS GREAT, GOD IS GOOD, THANK YOU FOR OUR GLUTEN-FREE FOOD!

MUSIC IS THE BREATH OF LIFE

Theresa

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My doctor has been doing blood panels....checking nutrient levels about every 6 months. It's nice to know whether you are healing and starting to absorb nutrients.

I have had blood work done for other reasons since my diagnosis. I know that my iron, D and calcium levels have improved since I changed my diet. Are these some of the items that would be checked on a celiac blood panel?

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Hi Woodrow,

Glad you found us! As Laura mentioned, at this point it would be a good idea to have your antibodies checked to see how you're doing there. I had mine done at a little over a year, and again last fall. Despite my sensitivity, my numbers were all in the "normal" range and a second biopsy taken this past September--3 years after the first one was also normal.

However, because my liver enzymes were elevated (over a period of time) I had additional testing and was diagnosed with Microscopic Colitis. My doctor said that it's associated with Celiac (she actually suspected it right away given my ongoing symptoms and history) --it might be something to mention to your doctor....on the off-chance.

The Celiac Panel doesn't test for other deficiencies like iron or calcium, but your doctor can order them to be done along with the panel.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong.

I think you are absolutely correct.

I also think that many of us (myself included) owe those of you who are extremely sensitive a HUGE thank-you.

If you, ravenwoodglass, and many of the others had not posted about your experiences, I would never have known enough to go gluten-free in the first place. Because of your experiences, I didn't wait for a doctor's permission, or for a "gold-standard" diagnosis. Your wisdom-by-experience allowed me to put 2 and 2 together BEFORE I suffered more than minimal damage.

And the continued health problems and multiple autoimmune disorders that plague many of you are what motivate me to STAY gluten-free. You put real-life faces on the risks associated with continued gluten ingestion.

So, for myself, and on behalf of the Newbies-to-come, THANK YOU for sharing what you have learned.

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Oats are wonderful, unless they make you sick! OK, here is some info that might help.

This is a link to a USA FDA slide show put together by Frank A. Hamilton MD NIH, about celiac. This link is to slide 24, where it starts to talk about oats a little. They refer to a "large study" by G. Gilmartin in the 1-Jan-2003 issue of Gut. Thye bascially state that oats are not a problem. I haven't read the article and it doesn't say much about it, like how many people were involved etc.

slide show

http://www.cfsan.fda.gov/~dms/gluthami/gluham1.htm

Now, in the FDA testimony about food labeling issues, there are quote from celiac center reps who have different opinons. One stated that she saw no relation to oats and patients reactions, the other rep said she had a few patients that did react to oats.

Here is the link to the testimony:

http://www.cfsan.fda.gov/~dms/glutran.html

The whole testimony is fairly long, but an interesting read.

There were 2 reps from celaic treatment centers who testified.

Pam Cureton, R.D., L.D.N., Dietician, Celiac Research Center, University of Maryland MS Cureton said no oats

Anne Lee, M.S., R.D., Celiac Disease Center, Columbia University

Ms Lee Said oats mostly ok if gluten-free oats

Quote

"MS. LEE: We have had one or two people that have not tolerated them well but it is really few. Interestingly, it was two adults. The kids that we have that are doing oats, as Pam's patient also--they are thriving; they are thriving, which is one gentleman and one female. So, it didn't seem to be a gender issue, just an individual tolerance. Again, when we introduce oats we do things, as we do with any trial type of a diet, we don't let them go gang-busters. I feel that many patients do react to oats initially if they go from a very low fiber diet, which the traditional gluten-free diet can be, very devoid of fiber, and if they add a lot of the alternate grains that are very high fiber, you can get a reaction. Anyone would get a reaction to that dramatic increase in fiber. So, we instruct them to add the oats slowly and monitor. They even do it as an alternate day until we establish the tolerance for the oats and the other grains also."

End Quote

Quote

DR KANE: (*See errata) What about the oats issue? Are they including oats or not?

MS. CURETON: They are not including it; they are asking. They are asking for permission. When they come to see us they are asking for permission. At this point we do not allow oats at our center. There are other centers that do. I basically give them that information. I tell them that we are not recommending at this time and I tell them other centers are, and they are okaying it, and what I ask them to, if they do decide to make a decision to try oats, to please let me know so we can then follow their antibody levels to make sure that they are doing it safely. So, we would just follow those patients if they choose to do that. We, again, present them with the latest and what our opinions are and just ask them to tell us if they are going to try oats and then we will follow them for their antibody levels.

End Quote

slide 1

Celiac Disease-A not so Uncommon Disorder

Frank A. Hamilton, M.D., MPH National Institutes of Health National Institute of Diabetes, Digestive and Kidney Diseases August 19, 2005

Slide 24

Oats are they Safe?

* Studies from 1970's suggested that oats were toxic in celiac disease

* Oats contain a protein-avenin

* Avenin- similar to wheat gliadin

* Both are prolamins rich in glutamine and proline, both amino acids

Slide 25

OATS

* Avenin- proportion of proline and glutmaine is very low in oats compared to gliadin in wheat

* 2004, Random. Clin Trial in

* children fed GFD vs. GFD with oats

* Hogberg Gut May 1, 2004 53(5)649-654.

Slide 26

Findings

* First large study to indicate that oats in GFD do not prevent normalization of the small bowel tissue or celiac markers.

* Other evidence supporting the safety of oats; G. Kilmartin Gut, January 1, 2003

* In celiac disease, oats are not toxic and immunogenic, Srinivasan BMJ 1996:1300-01

Oats and me get along great, is that a song? :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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Hi Woodrow,

Glad you found us! As Laura mentioned, at this point it would be a good idea to have your antibodies checked to see how you're doing there. I had mine done at a little over a year, and again last fall. Despite my sensitivity, my numbers were all in the "normal" range and a second biopsy taken this past September--3 years after the first one was also normal.

However, because my liver enzymes were elevated (over a period of time) I had additional testing and was diagnosed with Microscopic Colitis. My doctor said that it's associated with Celiac (she actually suspected it right away given my ongoing symptoms and history) --it might be something to mention to your doctor....on the off-chance.

The Celiac Panel doesn't test for other deficiencies like iron or calcium, but your doctor can order them to be done along with the panel.

Thank you so much for your response and valuable information. I plan on calling my doctor tomorrow and also plan on being a regular viewer of this forum. In just one day of joining I have learned so much. Your support is invaluable! Thank you to all!!

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I wonder if being a super sensitive celiac makes you more susceptible to other food sensitivities?

On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chance of being completely normal afterwards is slim to none. He told me is was "damaged". LOL :lol: Sometimes I wonder too about genetics, and if certain genetic coding predisposes one to be more sensitive to gluten and other substances.

This is my 1st post, I just joined this eve. Can I request my doc test for other sensitivities? soy, casein, etc.? I have been gluten-free for 13 months, allergist said...Positive for Celiac, all 5 panels??? still feel lousy.

I wrote to you because your Quote spoke to me. I'm going to use that one! B)

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Welcome!!!

As far as I know, and hopefully someone will tell me if I'm wrong, most intolerances can't be tested for. My GI told me he would test for lactose intolerance if I really wanted to know, but it sounded painful, and knowing I can't have dairy is enough for me. (Besides which, I don't think I'm lactose intolerant, so I figured it would've been negative)

I have used a lot of what I found on this site and done trial and error. I started with dairy, the most common culprit, and when that didn't quite do it either, out went the soy and corn (really, most grains). It's the same idea as with gluten, once it's gone and out of your system, eating it once will usually give a clear answer.

We'll be damaged together :lol:


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Liz, question for you. I'm already dairy and soy free and am pretty sure corn is going to be added to the list soon. What flours/bread mixes do you use?


---------------------------------

MP - celiac for 10 years

 

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Welcome Shaw :)

When I realized that I had issues with other foods besides Celiac (several months into the gluten-free diet), I sought the help of an Allergist/Immunologist. He started by testing me for "classic" allergies through skin-prick. Nothing turned up positive except for dust mites and cats--no foods.

I asked about the blood test for food intolerance, and he told me that he doesn't do them since they yield a lot of false positives. He said that once you eat a food, your body makes antibodies to it. According to him, even after having this type of test, most people still end up doing an elimination diet just from the many positives.

This doctor seemed to me to have a good understanding of food-related issues. He himself is dairy-intolerant and he has a Celaic aunt.

He guided me through my elimination diet, and although it took some time, I feel that it was the most accurate way to figure out what my systen doesn't like.

I related this whole thing to my new Gastroenterologist, and she said that he was absolutely right. I feel comfortable with the opinion of these two doctors, in their own ways they helped me so much to untangle all of this and get me to a point where I have many more good days than bad.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Liz, question for you. I'm already dairy and soy free and am pretty sure corn is going to be added to the list soon. What flours/bread mixes do you use?

Right now I'm using only almond flour (NOT BRM, I get it online from a place called Honeyville). Of course I have every other flour you can imagine in my cabinet. I still use potato starch or potato flour if I'm cooking something that has a sauce, or for the occasional breading that I do.

As for bread, I rarely have it, but I've made this one once. I used a pan that was too big, but it tasted great! So, I bought a smaller pan and I'm going to make it again this week. I'm trying to get the proportions right to make a bigger loaf.

http://www.chow.com/recipes/13579


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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