What are your gluten reactions like?

Zizzle · Post by **Zizzle** » Mon Sep 13, 2010 11:22 am

I've managed to gluten myself muliple times in the last couple of weeks and my LC has flared back. I suppose I'm allowing it subconciously, since I'm getting bloodwork for celiac disease later this month. First it was a Nathan's hot dog (frozen from last year - not the new GF ones), then a bite of chili at a friend's house made with with some starch-based chili mix. What surprises me is how QUICKLY I react. For example, within 5 minutes of eating the hot dog, my old 4 month pregnant belly was out again. Someone even asked if I was expecting!! I had stomach rumbling, gas and watery D within the hour, then 6+/day for the next 2 days.

The chili, (just 2 bites!) was almost instantaneous. By the time it reached my stomach, my body already knew. Stomach rumbling and a race to the bathroom ensued. I'm still recovering from that one.

I don't think I get brainfog issues, but I do feel like taking a nap when it happens. Is this how it goes for you?

Post by **tex** » Mon Sep 13, 2010 1:01 pm

Zizzle wrote:I had stomach rumbling, gas and watery D within the hour, then 6+/day for the next 2 days.

The chili, (just 2 bites!) was almost instantaneous. By the time it reached my stomach, my body already knew. Stomach rumbling and a race to the bathroom ensued. I'm still recovering from that one.

And you feel that you must have a positive blood test result, to convince you that you're gluten-sensitive?

You must be from Missouri.

My reactions have never been that fast. The usual time lag was from 3 to 6 hours.

Tex

JLH · Post by **JLH** » Mon Sep 13, 2010 3:45 pm

Tex,

Gabes-Apg · Post by **Gabes-Apg** » Mon Sep 13, 2010 3:54 pm

my reaction to dairy or gluten is tummy grumbling and discomfort within 20-30 mins of eating
this is the warning sign to get near a toilet soon

anything between 1 - 3 hours later i have D.

for small quantity of gluten i will only have 1 or 2 motions
for larger quantity of gluten it will be a bit more

i had 3 of these whilst in France (June this year) and have only had one since being back in australia

the one at home one in July was when i realised I have to be a bit more careful in the kitchen and can not share cooking utensils with TK's food that has gluten

Joefnh · Post by **Joefnh** » Mon Sep 13, 2010 4:44 pm

For me within 40 - 60 minutes I will experience and increase in abdominal pain with cramping ( my warning sign to get near a bathroom) and I will see within 60 minutes pain in my joints and lower back. Sometimes thankfully rarely I will have little to no warning on finding a bathroom.

I have been inadvertently glutened a few times, with the the predictable results.

--Joe

Robbie · Post by **Robbie** » Mon Sep 13, 2010 5:12 pm

I don't have any experience with this yet, since I'm still on gluten. However, I did go wheat free (including hidden sources) for one month 15 years ago. I ate some wheat one afternoon to test myself and within minutes I became very sleepy. I felt like I had taken a sleeping pill and I could not stay awake. I had to go to bed and I slept for several hours. I'm not a napper, but if I do happen to be able to take a nap I never sleep longer than ten minutes, not for hours. It was the wheat, I'm sure.

Zizzle · Post by **Zizzle** » Mon Sep 13, 2010 5:43 pm

Well I'm in downtown Cleveland for a conference and getting ready to find a restaurant. I guess I should have my stuff for tomorrow ready in case I get glutened and crash! I've perused 2 menus so far, with each having only one possibly gluten free item on them. I guess it'll be the filet mignon or organic half chicken. It's a good thing I packed a dozen Lara bars and Natures Valley GF nut bars. I may be needing them. So boring...

Joefnh · Post by **Joefnh** » Mon Sep 13, 2010 6:29 pm

Zizzle I have come to realize that while the expectation of having a good meal is important, that this is only food it is fuel. Occasionally having something boring to maintain health is a good thing.

There are some posts here that i do not have links to on hand, but several of us have created cards to carry with us that have a quick, clear and simple list of foods we can eat and the foods and ingredients we cant. This card has come in quite useful both here in the US and while traveling.

In restaurants that do not have a GF menu, talk to the waiter or better the chef / cook and see if they can be creative and come up with something using those guidelines. The chefs really like to be challenged like that. I have gotten several great meals that way.

That's great Zizzle that you have thought about having foods with you that you can eat. Many of us do the exact same thing.

Take care Zizzle and keep up the good attitude

--Joe

Gloria · Post by **Gloria** » Mon Sep 13, 2010 8:02 pm

zizzle wrote:I'm getting bloodwork for celiac disease later this month.

I noticed that you have the HLADQ2 gene. If I'm not mistaken, that is one of the two known celiac genes. You surely are celiac if you are also reacting to gluten.

Gloria

Zizzle · Post by **Zizzle** » Mon Sep 13, 2010 9:05 pm

Hi Gloria,
That's precisely what I'm trying to figure out. 30-40% of Americans also have the HLADQ2 gene, but only a fraction of them have celiac disease. Apparently gluten intolerance plus the gene is not enough to prove that you have small intestine villi damage. While I seem to have some mild vitamin deficiencies and I'm wildly lactose intolerant, I've never been anemic and don't seem to have other major celiac complications (besides the MC). Maybe I'm in denial. A month ago I wanted the diagnosis so people would understand and take note. Now I don't.
I've spent much of the last week mourning the loss of my old diet, or at least what it represented -- a laid back approach to life. It kills me to talk to waiters (and then restaurant managers) about my food intolerances. Tonight I ate at a Chocolate Bar, and after talking to the kindest wait staff (and a gluten intolerant hostess), my side salad came out with tons of shredded cheese on it. Apparently the lactose intolerance was only discussed with the martini makers. So rather than send it back or not eat it, I dutifully scraped off as much as I could, and decided I just can't live my life being this anal retentive. So gluten free, yes. Casein and soy free -- probably 95%. I think I'm OK with that choice for now. I know I should do better, but I just can't. I want to live my life with some remains of the laissez fair, carefree attitude I used to have.

Gloria · Post by **Gloria** » Mon Sep 13, 2010 9:32 pm

Hi Zizzle,

I totally understand where you're coming from. I also miss the casual lifestyle I used to have. I was working in my yard until dinnertime tonight and thought "Wouldn't it be nice to go out to dinner?" It would have been a perfectly natural thing to do four years ago, but I rarely entertain the idea now.

It will take a while for you to adjust to the new way of eating and you do go through a mourning period. It took me a few months before I could go grocery shopping without getting misty-eyed. In the beginning stages, though, I found it fun to try new recipes and see how easily I could adapt an old recipe to a GF one. It seemed like an adventure. I hope that once I'm able to add more foods to my "acceptable" list, I'll get that enthusiasm back again.

Eventually, you begin to realize that changing your eating habits is the only way that your MC can go into remission. There are no other options to choose from, other than to live with the symptoms.

Gloria

Polly · Post by **Polly** » Tue Sep 14, 2010 7:26 am

Hi Z,

With accidental glutening, I get a soft BM about 16-18 hours later. With dairy, I get battery acid D within 2 hours and have neck/shoulder pains the next morning. Of course, I have been mostly in remission for many years now. Early on, the reactions were more immediate.

Love,

Polly

Post by **tex** » Tue Sep 14, 2010 8:57 am

Zizzle wrote:That's precisely what I'm trying to figure out. 30-40% of Americans also have the HLADQ2 gene, but only a fraction of them have celiac disease. Apparently gluten intolerance plus the gene is not enough to prove that you have small intestine villi damage.

I understand what you're seeking, and I wish I could tell you that you will find closure, but in reality, that is unlikely, unless the guys in the white coats decide to change the definition of celiac disease, and that does not appear to be likely, anytime soon. The problem is that there is a huge gray area, which the celiac docs refuse to acknowledge - they insist that it does not even exist, even though millions of patients are out there, with these symptoms. Unfortunately, under the current celiac diagnosis criteria, even the presence of villus damage is not sufficient for a celiac diagnosis, as verified by the research report on a study of a cohort of subjects with MC, at the following link. (The red emphasis in the quote is mine, of course).

Moreover, in over 10% of patients who underwent esophagogastroduodenoscopy, duodenal biopsies showed villi alterations classified as Marsh I damage, without clinical and serological data for diagnosis of CD.

http://www.ncbi.nlm.nih.gov/pubmed/20575599

Obviously, some of the criteria required for the diagnosis of celiac disease, are invalid, and a few GI docs are beginning to accept that realization, and work around it, while the majority apparently still go by the book, (even though the book is clearly wrong).

Tex

harma · Post by **harma** » Tue Sep 14, 2010 12:38 pm

Before I started to be glutenfree my main symptom was bloating, bloating and bloating, the is the main difference I see now, after being 100% gluten free for 10 months now. Other difference I notice is the absence of brain fog. At the moment I have no idea what will happen if eat gluten now (on purpose or by mistake). I expect that bloating will be the main signal of a diet mistake.

Linda in BC · Post by **Linda in BC** » Wed Sep 15, 2010 9:30 pm

Gluten is not my main intolerance but since going GF in June I have recently recognised that I don't get the brain fog, "must lay down and sleep now " feelings that I used to get. I say it is not my main intolerance because I can eat it and get mild D, but not usually till about 12 hours later. But with casein it is almost instantaneous.. within minutes I know I have ingested it because of the rumbling, gurgling and discomfort I feel, and within 2 hours explosive, nauseating D movements...
And I also get a similar reaction to something(s) that I have yet to identify. For example, today I met my sister for lunch (something I, too, rarely do anymore) and, as there was much else on the menu that I could eat, I opted for the bacon, eggs , hash browns (home shredded and grilled) and gluten free toast. (The mother of the young woman who runs this restaurant has a gluten free bakery called Maggies Gluten Free kitchen so she is well aware of cross-contamination and even suggested that I not have the deep fried hash browns as they are cooked in the same oil as the wheat breaded chicken. ) So, you would think this would be a gluten, dairy, corn and soy free meal. Well, maybe but within two hours I was very, very sick, as described above. Usually I can keep a positive attitude about this but, because lately I seem to have D. no matter what I eat, I just felt like crying.

Linda