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Losing Hope...
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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! :)

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Hi kswan...

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

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

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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?

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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. :)

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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.

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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?

You poor baby! The prep for a colonoscopy is pretty rough to go through. Much worse than the procedure itself. I'm very surprised they didn't give you an IV to rehydrate you. Next time ask them to run one? If I'm having any sort of procedure I've learned to ask for an IV to hydrate me..I'm not shy about it.

I'm glad you have Gatorade, because your electrolytes are probably out of whack from the clean out? Do you have someone that can get you some bananas? Applesauce is usually pretty easy on the digestive system too.

It's good that they did the colonoscopy. When they find polyps early in their development they remove them and that's it. They can't grow into cancer.

I had colon cancer. It was stage 1 and instead of removing the growth they took out that section of the colon and spliced together the two peces that were left.(resection)It's normal for them to go back and do a recheck, but I can tell you... colon cancer is generally a slow growing cancer, so don't get freaked out about it. I had to have a colonoscopy once a year for the first 5 years after my resection surgery, just to make sure nothing new popped up...and nothing did.

If the polyp was removed I don't know why you would need a surgeon? If they just took a biopsy, then maybe they'll want to do a resection on you if they find it's cancer rather than benign? Did you have someone with you? Do they know why the Dr. would say to talk to a surgeon?

If you're still not feeling good..call the Dr. Tell him how you're feeling and see what he suggests? Sometimes air can get trapped in the colon. They blow it in to see better. It can be uncomfortable, and I don't know if you're having that problem? Try laying on your side to help pass it. Some people get some relief by laying on their back and bringing the knees up to your chest and rolling a bit from side to side too.

You sure have been through a lot and it's really a shame the gluten question seemed to be dismissed. I hope biopsies were taken just to be on the safe side? It's not uncommon to have a GI not listen and not take the samples though, sadly.

It may be up to you to just go gluten-free and stay that way for a while to see if it gets you feeling better. Now that your endo has been done, there's no need to eat it.

(((gentle hugs)))

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Recovered from colonoscopy today. Feeling hydrated and no more "going". The recovery room did give me IV fluids. 4 bags! And they kept saying that I was "unusually dehydrated". I told them this was not a screening but a diagnostic test and that I have been dehydrated for weeks. No one listened. Anyway, I feel hydrated today (was able to keep down all that gatorade) and ate a little as well.

I did have someone with me but they wouldn't let her in to the recovery room or talk with the doctor. I barely remember what the doc said - but I do remember that he told me to see a surgeon, have another colons. in 3-6 months, that he took out 3 (4?) and one was a "large sessile". I had to look that up on google!

Thank you so much, Bubba's Mom for telling me not to freak out. Reading what you have been through helped me to let go a little of the fear and just wait and see.

I still need answers to my pain and all that inflammation. I want my gall bladder, pancreas and liver checked. I want to know my immune levels (IGg, IGe, etc) and I want to have allergy testing for foods. I need that new doctor to come back from maternity leave asap!

JustLisa - I was feeling alone, but your post helped me to know that I'm not really alone. I have all of you! Thanks...

SquirmingItch...I felt your hug all the way across the internet. Guess I really needed it.

I plan to talk to the WITCH tomorrow - for all the good that will do!

By the way...my name is Kimberly

xo

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Wonderful to hear you are feeling better today Kimberly! Yes, Bubba's Mom has been through the ringer herself so she knows a lot of stuff & has great advice.

Hope your doc on maternity leave gets back soon!

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Recovered from colonoscopy today. Feeling hydrated and no more "going". The recovery room did give me IV fluids. 4 bags! And they kept saying that I was "unusually dehydrated". I told them this was not a screening but a diagnostic test and that I have been dehydrated for weeks. No one listened. Anyway, I feel hydrated today (was able to keep down all that gatorade) and ate a little as well.

I did have someone with me but they wouldn't let her in to the recovery room or talk with the doctor. I barely remember what the doc said - but I do remember that he told me to see a surgeon, have another colons. in 3-6 months, that he took out 3 (4?) and one was a "large sessile". I had to look that up on google!

Thank you so much, Bubba's Mom for telling me not to freak out. Reading what you have been through helped me to let go a little of the fear and just wait and see.

I still need answers to my pain and all that inflammation. I want my gall bladder, pancreas and liver checked. I want to know my immune levels (IGg, IGe, etc) and I want to have allergy testing for foods. I need that new doctor to come back from maternity leave asap!

JustLisa - I was feeling alone, but your post helped me to know that I'm not really alone. I have all of you! Thanks...

SquirmingItch...I felt your hug all the way across the internet. Guess I really needed it.

I plan to talk to the WITCH tomorrow - for all the good that will do!

By the way...my name is Kimberly

xo

I'm so glad you're feeling better. Being dehydrated makes a lot of your organs work harder..even your brain doesn't like it. I'm surprised they let you go if they gave you 4 bags of IV solution and you were still dehydrated, but I'm sure they thought that was enough?

So many of us have been through procedures and tests, but not the right ones. I hope you can get someone to check out the things you have concerns about. If you want the blood tests for Celiac, you have to continue to eat gluten to get accurate tests. I hope your Dr. gets back soon!

A full blood panel should check various levels which would show up any liver or kidney problems. Gallbladder is a bit trickier. Dr.s will order ultrasounds to look for stones, but many don't think to order a gallbladder function test, which is a HIDA scan.

If you have any damage in the duodenum (which should have been seen during the endo),it can affect gallbladder and pancreas function by not producing the CCK hormone that is made and sent from there to signal the two organs to release bile and digestive enzymes. With healing it's expected that function should return. That's where I am right now...waiting. I was advised to have my GB out, but I didn't want the surgery. Dr. Murray at Mayo agreed with me that we should wait and see if I regain function. I take digestive enzymes to break down my food.

Keep pushing for answers.

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Didn't know where to look for answers so I'm continuing this ridiculously long thread..

Biopsy results show inflammation in lining of stomach. Polyps: 2 benign, 2 pre-cancerous. Recommending another colonoscopy in 3-6 months (done inpatient due to the complications with first one.

And, of course, "no evidence of Celiac", but I have learned here that without being on gluten my test would be negative.

Here's the thing. I still feel awful. I'm chronically tired. My hair is thinning and I feel kind of down. Back to work full time and just dragging through. Being off gluten, soy and dairy for close to 3 months now, I thought I would feel a lot better. When I do test myself (trying to make a believer out of myself since the doctors don't believe)with gluten I feel awful. The first time it took hours to "come on" and wasn't too bad. Since then, it takes a very short time and I feel lousy for a couple of days!Soy and dairy do this also. Last night though, I ate roasted sweet potatoes, jasmine rice and roasted carrots and I was nauseous all night. No appetite today and still feel like it's sitting like mud in my gut. Mostly I think I shouldn't eat at all.

I have appointment to FINALLY see a GI specialist on Oct. 1st. But ... I don't have confidence that anyone is paying attention. Still losing weight.

PCP says no cancer in pancreas or liver (how does she know this?). Kidney function is fine. Haven't had the gallbladder function test yet nor the small intestine bacterial overgrowth test. PCP wanted me to wait to see GI. I'm going to insist on both tests.

Anyway, remember "losing hope"? Kinda feels that way. Thought the depression, fatigue and general malaise would disappear once I changed my diet. Bugger.

K.

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Someone on here had problems with sweet potatoes & they switched to organic sweet potatoes & the problem went away! Just throwing it out there.

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Didn't know where to look for answers so I'm continuing this ridiculously long thread..

Biopsy results show inflammation in lining of stomach. Polyps: 2 benign, 2 pre-cancerous. Recommending another colonoscopy in 3-6 months (done inpatient due to the complications with first one.

And, of course, "no evidence of Celiac", but I have learned here that without being on gluten my test would be negative.

Here's the thing. I still feel awful. I'm chronically tired. My hair is thinning and I feel kind of down. Back to work full time and just dragging through. Being off gluten, soy and dairy for close to 3 months now, I thought I would feel a lot better. When I do test myself (trying to make a believer out of myself since the doctors don't believe)with gluten I feel awful. The first time it took hours to "come on" and wasn't too bad. Since then, it takes a very short time and I feel lousy for a couple of days!Soy and dairy do this also. Last night though, I ate roasted sweet potatoes, jasmine rice and roasted carrots and I was nauseous all night. No appetite today and still feel like it's sitting like mud in my gut. Mostly I think I shouldn't eat at all.

I have appointment to FINALLY see a GI specialist on Oct. 1st. But ... I don't have confidence that anyone is paying attention. Still losing weight.

PCP says no cancer in pancreas or liver (how does she know this?). Kidney function is fine. Haven't had the gallbladder function test yet nor the small intestine bacterial overgrowth test. PCP wanted me to wait to see GI. I'm going to insist on both tests.

Anyway, remember "losing hope"? Kinda feels that way. Thought the depression, fatigue and general malaise would disappear once I changed my diet. Bugger.

K.

I feel so bad for you. Getting sick from the meal you had which seemed very mild, might indicate that you need digestive enzymes? Those items all have carbs which can be hard to digest. If you aren't digesting well vitamin/mineral levels can be low and have you feeling depressed and miserable. Malabsortion of fats and fat soluable vitamins may be a factor? That can affect your mood.

Be sure to push for the SIBO test..and HIDA scan. Ask about pancreatic insufficiency.

I hope you get some answers. It's sure taking them a long time to get things sorted out for you! :(

(((hugs)))

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Someone on here had problems with sweet potatoes & they switched to organic sweet potatoes & the problem went away! Just throwing it out there.

That was me. Organic sweet potatoes worked but organic apples didn't. That was because the apples were high in salicylates, which may also be a problems for you, K.

I'm sure you've all heard about the study by now that says organics are no better for you than non-organics. NUTRITIONALLY speaking, that may be true. But this study also said that non-organics have such "minimal" amounts of pesticide residue that the government says it won't harm you. HAH! I'M here to tell you that they DID harm me, and if anyone wants to let pesticide residues build up in their system because the government says it's OK, well, let them. But I sure won't!

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I'm with you bartful!

I couldn't remember who that was with the sweet potatoes.blink.gif

And if you want to know what they do to regular potatoes so they don't sprout in the store then just google it. OH MY!ohmy.gif

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...

Last night though, I ate roasted sweet potatoes, jasmine rice and roasted carrots and I was nauseous all night. No appetite today and still feel like it's sitting like mud in my gut. Mostly I think I shouldn't eat at all.

...

I remember when it it felt like it may as well have been digestion itself that started a reaction - didn't matter at all *what* I ate. :( ugh

That meal looks simple enough to seem safe. The wrong oil, if any, or dried spices could've done me in anyway in those days.

Any chance something like that could apply?

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I remember when it it felt like it may as well have been digestion itself that started a reaction - didn't matter at all *what* I ate. :( ugh

That meal looks simple enough to seem safe. The wrong oil, if any, or dried spices could've done me in anyway in those days.

Any chance something like that could apply?

Yeah-it's exactly like that. Nothing seems to sit well.

I did use olive oil instead of vegetable oil this time. I ate this same meal about and week ago and didn't have the same reaction then. No spices but the sweet pots weren't organic either time. Sure did me in though and not going to take a chance again. :-(

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I feel so bad for you. Getting sick from the meal you had which seemed very mild, might indicate that you need digestive enzymes? Those items all have carbs which can be hard to digest. If you aren't digesting well vitamin/mineral levels can be low and have you feeling depressed and miserable. Malabsortion of fats and fat soluable vitamins may be a factor? That can affect your mood.

Be sure to push for the SIBO test..and HIDA scan. Ask about pancreatic insufficiency.

I hope you get some answers. It's sure taking them a long time to get things sorted out for you! :(

(((hugs)))

Been taking digestive enzymes every time I eat! *Digest Gold*

I know I'm not digesting properly. The PCP tested my vitamin levels and only D came up low and I've been taking heavy dose of D (prescribed). At least I don't think anything else was low. It's hard to get her to tell me exactly what she has tested.

Mood, sleep and hair definitely affected. I will push for SIBO and HIDA scan for sure! My PCP supports both but wanted me to see GI and go forward with the GI. Someone here mentioned that the Beth Israel Deaconess Hospital in Boston has a celiac clinic and top docs. I'm hoping SOMEONE is going to figure this out but after reading so many stories shared on this site I worry that they never will.

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I have low D also kswan & have been put on high doses. I haven't been able to tolerate it. I don't have quite the problems you do but I can say without a doubt that the D gives me indigestion & I'm not talking about normal indigestion but making your body quiver, hands shake, getting nauseous kind of indigestion. I tried taking 1/2 the dosage & still got got. Now I take 1/2 the dosage 2 or 3 times per week & seem to manage that w/o too much problems. I figure I'll just have to go the slow route with them.

Editing to say I am low in D3 & it's D3 I am taking.

Edited by squirmingitch
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I learned SO much here and thank you all for help with the journey. I finally saw a GI (who is great). She did a genetics test for Celiac and it was negative. Also did SIBO test and was positive. Lots of bacterial overgrowth. I went on Xiflacin for 10 days and then my tongue started to swell so had to go off but she thinks it was likely long enough anyway. Today I had a gastric emptying study and it was normal. I am still sick - but now we have to go the route of food allergies. Still nauseous after every bite of food, still can't/don't eat dairy, soy or gluten and still have awful bloating and pain. She's going to test for gallbladder function and re-do the kidney test.

I think about all of you and what you struggle with and how hard it is. I carry you all in my heart now!

Kimberly

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I'm glad you have found yourself a good doctor, but so sorry to hear you are still in pain. :(

One more suggestion as far as an elimination -- corn. For me, corn gives the exact same symptoms as gluten, and it is a problem for many other celiacs as well. It might be worth a trial. :)

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I learned SO much here and thank you all for help with the journey. I finally saw a GI (who is great). She did a genetics test for Celiac and it was negative. Also did SIBO test and was positive. Lots of bacterial overgrowth. I went on Xiflacin for 10 days and then my tongue started to swell so had to go off but she thinks it was likely long enough anyway. Today I had a gastric emptying study and it was normal. I am still sick - but now we have to go the route of food allergies. Still nauseous after every bite of food, still can't/don't eat dairy, soy or gluten and still have awful bloating and pain. She's going to test for gallbladder function and re-do the kidney test.

I think about all of you and what you struggle with and how hard it is. I carry you all in my heart now!

Kimberly

I really suspected you had SIBO. Be sure to take probiotics. The Xifaxin kills all bacteria, even the good kind. You need to replace it with a supplement. Probiotics also help get rid of bad bacteria that the antibiotic may have missed.

It takes a while to heal. The SIBO causes damage to the intestine just like Celiac.

There's a thread here about Nettle Tea. Quite a few of us are drinking it and finding it helpful for inflamation..maybe you could try it?

Also, your GI can prescribe pancreatic enzymes to help digest your food. Much more effective than the over the counter ones.

(hugs)

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I'm glad you have found yourself a good doctor, but so sorry to hear you are still in pain. :(

One more suggestion as far as an elimination -- corn. For me, corn gives the exact same symptoms as gluten, and it is a problem for many other celiacs as well. It might be worth a trial. :)

Shroomie was posting at the same time as me. Yep..try omitting corn. Actually, 90% of all soy, and 85% of all corn is genetically modified to produce pesticide. I stay away from anything GMO now.

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Thanks for suggestion of eliminating corn and trying nettle tea. I have remained gluten, soy and dairy free since June 25th. I don't eat corn in general, but it could be in some other foods. I've always found corn hard to digest.

Done with Xiflaxin and actually, finally, feeling a little better. I am taking Align probiotics. I use Digest Gold as digestive aid (discovered it here) but I'm going to talk with GI about pancreatic enzyme. Can you tell me what GMO stands for?

Still have bloating and often have pain after eating. I think GI is going to send me to an allergy/immunologist to look at my Ig levels and see what foods I may be allergic to - maybe this can cause pain?

Will have another colonoscopy in February but will be done in-patient this time. What a nightmare in August. At least I finally have a really good GI doc.

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GMO = Genetically Modified Organism Most common modification is to make crop "round-up ready", i.e., immune to Round-up.

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Soy, corn, wheat and canola oil are often genetically modified versions in the USA these days. You can look for GMO free labels or organic labels if you want to avoid GMO's.

IgE immune responses are what make hayfever type symptoms, and they can come up very quickly. IgG immune responses are slower starting and with food tend to be to start the gut. Food intolerances are IgG or IgA immune repsonses. Yes,they can cause pain. These are the responses that destroy the villi in the gut with celiac disease.

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
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      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
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      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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