I'm Sure I Glutened Myself This Weekend

[mythreesuns]

Since I have two drs telling me there's no way I have celiac, but most likely a combination of an auto-immune disorder and Chrone's (I know, another AI disorder).

First of all, do you think commercially prepared sausage has gluten in it? Although I'm sure it doesn't matter, since I'm positive the tongs weren't gluten-free and the exchange of food in the car on the way there pretty much ensures I ingested some gluten.

I brought a huge salad to eat on the way to the picnic, but I gave in and had a sausage because I was so hungry and everyone else was eating.

Now, if I had Chrone's, would the diarrhea get better on a gluten-free diet??? I have diarrhea one or two days a week now as opposed to 5 or 6 days a week pre-gluten-free. Hmmm. Not perfect, but sounds like improvement to me! And as far as I've read (haven't talked to anyone with Chrone's though) diet makes little difference.

Although, the progression of my diarrhea to arthritis would be better explained by Chrone's rather than, say, Lupus or RA.

Aargh! All I want is freakin' answers. For once I gave in to my arthritis this weekend and spent most of my time at home in bed. But, sheesh, that doesn't work with 3 kids running around dirtying dishes and clothes! And of course the medicine the dr gave me for the arthritis gives me diarrhea so I don't take it anymore.

Hope everyone else had a better weekend than me.

[ravenwoodglass]

Since I have two drs telling me there's no way I have celiac, but most likely a combination of an auto-immune disorder and Chrone's (I know, another AI disorder).

First of all, do you think commercially prepared sausage has gluten in it? Although I'm sure it doesn't matter, since I'm positive the tongs weren't gluten-free and the exchange of food in the car on the way there pretty much ensures I ingested some gluten.

I brought a huge salad to eat on the way to the picnic, but I gave in and had a sausage because I was so hungry and everyone else was eating.

Now, if I had Chrone's, would the diarrhea get better on a gluten-free diet??? I have diarrhea one or two days a week now as opposed to 5 or 6 days a week pre-gluten-free. Hmmm. Not perfect, but sounds like improvement to me! And as far as I've read (haven't talked to anyone with Chrone's though) diet makes little difference.

Although, the progression of my diarrhea to arthritis would be better explained by Chrone's rather than, say, Lupus or RA.

Aargh! All I want is freakin' answers. For once I gave in to my arthritis this weekend and spent most of my time at home in bed. But, sheesh, that doesn't work with 3 kids running around dirtying dishes and clothes! And of course the medicine the dr gave me for the arthritis gives me diarrhea so I don't take it anymore.

Hope everyone else had a better weekend than me.

((((((Hugs))))) I am sorry you had such a rough weekend. And yes you most undoubtably glutened yourself at the party. Some sausages are safe, some are not. But the CC issue with the tongs and if the sausages were grilled from the grill itself would have gotten you.

As to the Chrons issue many chrons patients do see improvement of symptoms from a gluten free diet. I suspect many were celiac for years and the resulting damage is what caused the chrons in the first place. After I was finally diagnosed and my GI took the time to listen to my symptoms he told me they were not IBS symptoms but chrons. I tried to tell him many times before diagnosis that after my 10 years of daily D the D had gotten so severe it was waking me up each night for 2 hour violent painful D but he never listened. He had said I had IBS after my colonoscopy and closed off after that.

Your arthritic pain could very well be related to the gluten, unfortunately at least for me that took a time to resolve. It sounds like you are making progress and the gluten-free diet is helping, be patient with yourself and really search out the sources of CC and hidden glutens. I hope you feel better soon.

[queenofhearts]

Sorry you had a bad spell... I hope you can feel better on the diet, I'm betting you will. You know both D & arthritis are linked to gluten, so it sure couldn't hurt to try it. Really clean up all sources of cc, & stick with it for at least a few months, then you should have your answer.

Leah

[JennFog]

Sorry to hear, never fun feeling ill. Yes several sausages have gluten. I was looking at the grocery store yesterday.

These doctors that tell you there is absolutely no way it is celiac??? Have they run the blood work and a biopsy? Even if they have, read what happened to me...

A doctor at the hospital that I was admitted to, told my husband, he had no clue what was wrong with me, NONE, every test was negative (only ran tests for appendicitis), wrote a letter to my doctor, every test was negative. I got a copy of all this paperwork. It stated and I am not kidding, "Can't be Celiac, patient overweight"; none of the celiac tests had been run. Yes I am overweight but 2 months before the hospital I weighed 190, that day in the hospital I was down to 168. The hospital dr was told that I lost 22lbs in 2 months.

The next week, extremely sick on a chicken noodle, cracker and toast diet. In my doctor's office (by the way my dr is not a MD he is a DO) crying make it stop, I was going to the bathroom 12 times a day. My doctor immediately tested. Blood work all positive, then the biopsy was negative, but my doctor said, not a doubt in his mind, it is celiac disease, he didn't care if the biopsy was negative or not, he said, this was not an intolerence, due to my blood work showed clearly I am deficient in 5 vitamins and that day I started taking 5 supplements. With all of this information, he called my health coverage provider and was able to get them to pay for a dietician (what a waste). Which was covered under celiac disease but not under gluten intolerance.

He said if the test was done again it'd probably be positive, that not all biopsies are correct depending on who is reading the biopsy and how they interpret it, my dr was not a gastro office so he didn't perform the test, I have now been referred to a gastro, but my health coverage won't cover another biopsy till next year, which the gastro dr states next year I won't need a biopsy, because by then, I will be healed. He asked if I could get my mother to do all the tests, who had all the symptoms, I had, but not as bad. She was positive blood and biopsies.

3 month later, another call, guess what... my gastro got copies of ALL the hospital biospy reports... "Minimal damage to villi", not Villi are perfect or Villi are healthy... MINIMAL DAMAGE. My doctor filed a complaint on my behalf. I am not suing anyone, just complaining. Apparently a separate letter is written out to the doctors and copies of reports are not sent, just a letter of result, kind of thing.

So doctors aren't always perfect, if you feel better on gluten-free diet then follow it. But any future tests may be wrong if you are following a gluten-free diet. My gastro said he would run the biopsy next year, only if I was willing to eat 2 slices of bread everyday for three months. Well I am not willing.

[happygirl]

toni--your improvement, although not perfect, is indicative that you are doing well by lowering (and hopefully, eliminating gluten). i will be interested to read you response as to why your docs say you don't have it.

couple things to remember - if you do have it, or if you are gluten intolerant, even if you are 100% gluten-free, your body is healing, so you won't feel 100% right away. so the fact that you are still having D means two things....1. you are not fully healed....takes weeks, to months, to years...depends....and 2. you are probably still getting some gluten in your diet. It is a steep learning curve. The good thing is, once you TRULY get it, you get it....

i was dx with all kinds of things-acid reflux/heartburn, IBS/spastic colon, fibromyalgia, some sort of arthritis they couldn't identify, etc. etc. etc. have none of them after going gluten-free---they were all misdiagnoses. i have flare-ups of all when I have been glutened, but they are Celiac related symptoms, not separate symptoms.

hope this helps---good luck! you seem to be catching on quickly!!!!!!

[mythreesuns]

Thanks so much Jenn, Laura, everyone else.

I was told there was "no chance" of gluten intolerance or celiac because the blood tests and the biopsy were both negative. The gastro dr is the one who told me that. The continuance (though lessening) of the D and the arthritis is leading him toward testing me for Crohn's (finally, got the spelling right! LOL) and/or ulcerative colitis.

The primary doc is going along with the no celiac bit, but not discouraging me from continuing on a gluten-free diet. He is also vigorously pursuing the cause of my arthritis, which is a good thing I suppose. My fear is that the tests they ran last week will be negative...like every other test I've taken for anything.

What I don't understand is why the arthritis is SOOO bad, now that I'm gluten free. Now, to be fair, the arthritis had showed up in my foot first, and that is what prompted me to finally go gluten-free, but after 3 or 4 weeks gluten-free (mostly) the arthritis is EVERYWHERE and the fatigue from it is overwhelming.

I understand why it wouldn't have gone away right away, but why is it so much worse?? Ahh, well, I asked that question here before, so I won't expect any new answers. I'm just so tired from being in pain all day. ALL. DAY.

[JennFog]

Well I am not a doctor but my advice would be to watch your sodium intake.

Sodium is in almost everything. Soda, Gatorade, Fruit Juice, Lunch Meats, Soups, On the Table in a Shaker.

My father in law was having issues with his arthiritis, then he had a bout with gout, then sharp pains in the kidneys. After being hosptalized, he went home feeling good to only end up back in the hospital 3 weeks later.

They found that it was his sodium intake was the culprit. He was drinking about a gallon of gatorade a day (1760mg of sodium). That was before food, had in a blt or a ham sandwich or even a bowl of campbell soup. Imagine the sodium he was consuming in a day.

[evie]

Thanks so much Jenn, Laura, everyone else.

I was told there was "no chance" of gluten intolerance or celiac because the blood tests and the biopsy were both negative. The gastro dr is the one who told me that. The continuance (though lessening) of the D and the arthritis is leading him toward testing me for Crohn's (finally, got the spelling right! LOL) and/or ulcerative colitis.

The primary doc is going along with the no celiac bit, but not discouraging me from continuing on a gluten-free diet. He is also vigorously pursuing the cause of my arthritis, which is a good thing I suppose. My fear is that the tests they ran last week will be negative...like every other test I've taken for anything.

What I don't understand is why the arthritis is SOOO bad, now that I'm gluten free. Now, to be fair, the arthritis had showed up in my foot first, and that is what prompted me to finally go gluten-free, but after 3 or 4 weeks gluten-free (mostly) the arthritis is EVERYWHERE and the fatigue from it is overwhelming.

I understand why it wouldn't have gone away right away, but why is it so much worse?? Ahh, well, I asked that question here before, so I won't expect any new answers. I'm just so tired from being in pain all day. ALL. DAY.

I am wondering if your arthritis is rhuematoid? It seems that the night shade foods make that worse, they are potato, tomato,peppers and eggplant. Am sure you do not want more food restrictions but might be worth a try. My pain started in ankle too, late winter before DX and spread to wrists, bit better now there.

Last test I had no arthritis but recently read thyroid lack can cause tendon pain, especially in wrist..my thyroid needs to be upped rahter often. Just an idea for you, wishing you relief yesterday!!

Have best day you can. evie

[mythreesuns]

I am wondering if your arthritis is rhuematoid? It seems that the night shade foods make that worse, they are potato, tomato,peppers and eggplant. Am sure you do not want more food restrictions but might be worth a try. My pain started in ankle too, late winter before DX and spread to wrists, bit better now there.

Last test I had no arthritis but recently read thyroid lack can cause tendon pain, especially in wrist..my thyroid needs to be upped rahter often. Just an idea for you, wishing you relief yesterday!!

Have best day you can. evie

Thanks, dr tested my thyroid and RA during the last round of tests. Won't know the answers until Wed or Thurs.

As for the nightshades, I really don't eat a lot of those things, especially now. Well, tomatoes in my salad, that's about it. Haven't had a potato since I cut out butter (early June), don't eat peppers or eggplant, and only eat tomatoes in my salad, maybe 4 or 5 salads a week.

[covsooze]

Last test I had no arthritis but recently read thyroid lack can cause tendon pain, especially in wrist..my thyroid needs to be upped rahter often. Just an idea for you, wishing you relief yesterday!!

Have best day you can. evie

That's the way I knew my underactive thyroid was here to stay - the wrist pain.

Toni, I hope you manage to get to the bottom of this. (((hugs)))

[daffadilly]

Everyone, please remember to get a hard copy of any test. Do not just take the answer that is given to you.

Get a hard copy for your file, even if you cannot read it - someone can !!!! Plus it is just a good record to keep to compare to thru the years.

[mythreesuns]

Everyone, please remember to get a hard copy of any test. Do not just take the answer that is given to you.

I just started to do that a couple of months ago. Glad I did, because no one told me my sugar was high with the previous test!!!

Back to the original post...I'm feeling like this is going to be a D day. Isn't that sad, when you know as soon as you get up you're going to be running to the bathroom all day?

[ravenwoodglass]

Back to the original post...I'm feeling like this is going to be a D day. Isn't that sad, when you know as soon as you get up you're going to be running to the bathroom all day?

It may sound strange but when I get poisoned I am relieved when the D finally arrives because everything starts to get better after that is over with. I hope things improve for you after everything is cleared. ((((((hugs)))))))