135 replies to this topic

[eatmeat4good]

I agree with the above advice, but would recommend you trial each ingredient separately so you know if it is the corn, rice, potato, or Xanthan gum giving you problems. Clearly it is something in that mix. It might even be the egg, since it is possible to develop a reaction to foods at any time. Maybe baked goods with egg WERE ok but they are not now? Glad to hear you are doing mostly well with being gluten free. You have the longest thread I have seen that wasn't a common thread like "what are ya cooking tonight". Keep posting and let's see if we can get it to 100 just for fun! Oh yeah, plus we like to know how you are doing!

[Bubba's Mom]

I would question the cornmeal. I was doing fine with plain Fritos then all of a sudden I started to have bad reactions to corn. You never know if they're using GMO corn? You could possibly have a reaction to GMO corn that you wouldn't have to regular corn?
It's very frustrating to think you're on track..and being so careful and then whammo..out of the blue something bothers you! I'm hoping it was just a one time reaction for you.

[ciamarie]

I would question the cornmeal.  I was doing fine with plain Fritos then all of a sudden I started to have bad reactions to corn.  You never know if they're using GMO corn?  You could possibly have a reaction to GMO corn that you wouldn't have to regular corn?

If it was organic corn meal, it wouldn't be GMO. However, looking at the list of ingredients, I'd be questioning the potato starch. Most potato (and corn) starches are sulfited, so even if you do o.k. with regular potatoes, the starch might be an issue. Sometimes these things are really tough to track down.

[kswan08]

Results of abdominal Ct scan arrived. Inflammation of unknown origin. Ha!
Whatever it was that I ate (corn muffins or not) it's hit me hard. I am in pain and not able to tolerate any food. If my insides are so inflamed maybe no solid food is better for a while. I was doing so much better and then, wham! Ate a plain baked potato last night. Ended up with more pain, bloating and cramps. But that is happening now no matter what I eat so it could be inflammation rather than the actual food, right?
I knew I spoke to soon in my earlier post.
I am hoping that new doc will connect me with a GI though at this point I don't have much confidence in doctors.

[GFinDC]

If it is potatoes causing the problem then you might be reacting to nightshades. NIghtshade foods are tomatoes, potatoes, peppers, and eggplant. Nightshades can have enough alkaloids in them to cause problems for some people. Tobacco is a nightshade too. Not to 100 yet..

[Bubba's Mom]

Results of abdominal Ct scan arrived. Inflammation of unknown origin. Ha!
Whatever it was that I ate (corn muffins or not) it's hit me hard. I am in pain and not able to tolerate any food. If my insides are so inflamed maybe no solid food is better for a while. I was doing so much better and then, wham! Ate a plain baked potato last night. Ended up with more pain, bloating and cramps. But that is happening now no matter what I eat so it could be inflammation rather than the actual food, right?
I knew I spoke to soon in my earlier post.
I am hoping that new doc will connect me with a GI though at this point I don't have much confidence in doctors.

Have you been tested for small intestine bacterial overgrowth (SIBO)? I was reacting to more and more foods and was tested. They said I probably have a severe overgrowth, because not only was my hydrogen high..I exhaled methane which is very unusual. I was told that the bad bacteria feed on what we eat and emit toxins. They can give us very strong reactions.
There are a lot of different strains of bacteria and the ones that really like whatever you've been eating seem to thrive, so that your levels of various ones can change as what you eat changes...thus giving stronger reactions to foods sometimes.
I hope you've found a probiotic that agrees with you? It helps even out dysbiosis.

Try a diet that's bland for a bit until you feel better. Cooked veggies are easier to digest than raw. Have you tried Brussel Sprouts? They seem to be easily tolerated by most people.

I hope you can find a good GI. I have a fairly new PCP who isn't very helpful. She said up front that she didn't know anything about Celiac disease when I first met her. I just saw her on Friday and she told me I should find a good GI. Umm..duh! I told her I haven't found a good way to find one locally. They don't advertise as being Celiac savvy. There were a couple of names I saw in various news articles, etc. but they aren't accepting new patients.

If there's a good way to find a good GI I haven't found it!

I'm still struggling to put weight on and get more healthy. This new PCP told me I should try to gain some weight. Umm..yeah..very helpful.

We're getting there GFinDC.

[GFinDC]

....

We're getting there GFinDC.

Oh, look at that, we are indeed getting there! Close now, really close.

But if you want to read a long thread, search for the lyme disease thread Now that was a long thread.

[kswan08]

Well, I guess since I started the thread I should finish it as #100.
My (fired) PCP called me tonight to "further discuss" the results of my CT scan. She is "extremely concerned" about the level of inflammation and has asked me to have a colonoscopy and endoscopy "stat". Says that the inflammation is profuse throughout intestinal tract and lymph nodes are slightly enlarged. She brought up cancer and that scared me. She says that because I am still sick after I eat - even though I am on a strict diet - that it's "not likely what you are eating" ... I doubt that because of all that I have learned from this site. Maybe she should come on here and learn!
Anyway - what I want to say is THANK YOU. Without this site, without this thread I would have lost hope. It was here that I found answers to my questions, questions that I didn't know I had and a lot of compassion. I don't know what the future holds for me - maybe celiac, maybe inflammatory bowel disease, maybe food sensitivity, maybe cancer. But no matter what I got through this summer because of all the help I got here. I got educated and that's worth its weight in gold.
I also wanted to say that I think of each one of you and I often come and re-read your posts. I hear your own painful journey/s and am honored that so many of you shared with me here.
I know that this thread has taken on a life and it's rare that one goes this long. Thank you all so very much.
I'll be around - reading lots of posts, continuing this journey along with all of you.
((hugs))

[Bubba's Mom]

Don't let your Dr scare you! Mine kept telling me there was nothing wrong with me and ordered a CT scan just to shut me up. It showed a lot of very enlarged lymph nodes. It's what finally got me the referal to a GI and the endoscope that DXed me.

My enlarged nodes were caused by the inflamation of Celiac disease. Yes, it can be a symptom of cancer, but it's not very likely.
Because I had an intestinal cancer in the past the CT scan was repeated a while after my Celiac DX just to see how things looked. My nodes had started going down and returning to normal.
I was told the enlarged lymph nodes were caused by the eliac 100%

PS..it was very fitting that you were poster #100.

[eatmeat4good]

Yes, it was very fitting that you were poster #100 Kswan and I want to thank you for continuing to ask questions because I have learned a lot. Thank you Bubba's mom for your information on here and especially for your last post because it gives hope on the losing hope thread. I did not know that could happen and it makes me feel good to know you have been there and survived and it really was Celiac that caused it and that has to mean a lot to Kswan too, so thank you.

[FruitEnthusiast]

I think doctors often don't have the slightest idea what to do next, so they start throwing ideas out there, you probably have this or that. For as smart as they are "supposed" to be, they can be such boneheads. They can't fix everything, so they waste our time and money giving us busy work, when the truth is that it just takes time to recover. Gluten issues are the perfect example of that.

I agree, there is a lot more knowledge and experience on these threads than in doctors offices. Doctors have their purpose, but they are limited. Luckily we're all here to pick up where they've left off. I don't know what I would have done without this site. I would be losing my mind I guess. Many thanks to Scott, who started this site, and to all of you. You guys are the best!

[justlisa]

Hi kswan...

This thread "stuck" with me... It was a very informative thread...

Just found myself thinking about you today... How are you doing?

[kswan08]

I am not doing well. I had endo and colonos. yesterday and it, quite literally, nearly killed me. I was severely dehydrated when I went in and had told the GI this - along with my history for the past few months. I also explained that I was feeling very weak and that the clean-out had been severe (I was still "going" 15 hours after started the prep). I also explained that I was highly sensitive to medications. Then I was given both propofol and fentynl. In recovery my blood pressure dropped very low, I couldn't focus and had to stay in recovery for 4 hours. There were all kinds of doctors and nurses there but I don't remember much other than feeling awful. I don't ever want to go through that again! Then the GI doc said he removed 3 polyps, 1 of which was large called a sessile polyp. He told me I had to have another colonoscopy in 3-6 months. OMG. Now, of course, I'm scared it's cancer, scared to go through this again and no sign of celiac (which he simply dismissed despite me telling him that I had been off gluten since end of June). He told me I should see a surgeon but I don't know why. I continued to have diarrhea last night and lots of nausea. This morning I am feeling light-headed and weak. I got some GatorAide and will be drinking this all day but think I need some food too.
Needless to say, I'm a bit discouraged, feeling emotional and generally yucky.
Anyone else have this happen?

[justlisa]

Oh kswan...you poor thing! That's awful!

I really HATE that cold, disaffected, dismissive attitude from docs! My first rheumatologist fired me because she said I was "too emotional". So sorry to have shared my "emotions" with her...

I can't believe they didn't hydrate you...ugh...

That's so scary when they are so vague... You should call up the doctor's service and make him/her call you. You shouldn't have to go through the weekend with that additional stress!

I am so sorry you're feeling this poorly! While I am not suffering the exact same things, I do know what it's like to be so sick, scared and feeling alone.

Rest, hydrate and eat if you can (broths would be best, I think... do you have someone who can make them for you? Take care of you this weekend?

Come in here if you need "us".

Take it easy, honey.

[squirmingitch]

Wish I had some wisdom for you kswan but I have thankfully not had that happen to me. I bet someone here has though & I bet you will hear from them sometime soon.

Great big ((((HUGS)))) sweetie.

Keep us posted dear.