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Am I A Wimp?
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I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?

I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.

I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.

I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.

Am I a wimp or are there others there like me?

Thanks!!!

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No, you are not a wimp. I just gave up my job too. It was only part time, but I just dreaded it some days. I think I may have been getting glutened there, even though I didn't eat there. It was a meals program for the elderly and the new cook bakes bread, biscuits, etc. So, there was probably CC from the flour in the air. I miss the people, but I think the kitchen was toxic for me. :( I'm getting better, but I don't really feel like I can handle the stress of a job right now. Do what you need to do to get yourself better.

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I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?

I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.

I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.

I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.

Am I a wimp or are there others there like me?

Thanks!!!

I haven't been able to work for 3 years now because of this illness. I've been gluten-free for 1 year 5 months and I am considering going back to work part time in the future but I prefer to stay home because I have other food allergies to worry about besides gluten. I do various at-home jobs to bring in a little extra money, but we completely live off of my husband's income. I don't have any children either to use it as an excuse to stay home. When I was at my worst in this illness I was bedridden, in pain and slept most of the day (along with many other symptoms). I didn't stop workign by choice, however. Before I was bedridden with pain I was having unexplained sezures/fainting spells. I had a seizure one day at work. Ater that my manager told me I could not come back until I had a doctor's ntoes saying I was healthy enough to work again. The dr told me I couldn't drive anymore. My health just went downhill from there on. So no, you are not a wimp to take a few months off. If celiac was tested for more frequently and the tests were more accurate then I might have been screened early due to my family history of thyroid conditions and diagnosed before I got so bad. IMO, It's better that you have the choice to take off from work instead of havign to get so sick you are forced to do it first. Youa re also so blessed to have an understanding husband and family encouragign you to take a break. My husband is great but much of my extended family thinks I just don't work because I'm lazy or something.

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I think a good q to ask yrself is can u afford to take off for that amount of time & will it put yr job in jeopardy? Only you can answer that. With the economy as bad as it is you really need to know if you will have a job when you go back. If it is secure & you are certain you will have a job then go ahead & take off. It really has nothing to do with being a wimp. It has to do with economics & if you think you can get better within that time frame. Best of Luck to you!

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I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?

I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.

I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.

I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.

Am I a wimp or are there others there like me?

Thanks!!!

Great post/question Sunnydayz,

I was diagnosed last year at age 48 and I only took off about a week after I found out. But I wound up taking more sick days and barely, I mean barely, got through till June when school let out. Luckily I work for school district and I had alot of sick days built up over the years that I never used.

Looking back, I was so out of it in every way I wanted to just hospitalize myself somewhere,anywhere. So no, you are NOT a wimp. It's actually a smart idea if you can swing it. Do you have short term disability at your job where you can do that? You need time to heal and the added stress of figuring out what foods to bring to work etc is just added stress.

I have suspected MC myself for awhile though I am not sure. can you address that in this thread or send me a PM to tell me how/when you found out about the MC, symptoms, scopes etc?

get well,,, and stay away for ALL dairy!!! look on all your labels make sure there is no milk or dairy or buttermilk in any of your gluten-free flour mixes for pancakes etc. find only dairy/casein free processed foods. it will save you alot of bathroom time .

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No, you are not a wimp. I just gave up my job too. It was only part time, but I just dreaded it some days. I think I may have been getting glutened there, even though I didn't eat there. It was a meals program for the elderly and the new cook bakes bread, biscuits, etc. So, there was probably CC from the flour in the air. I miss the people, but I think the kitchen was toxic for me. :( I'm getting better, but I don't really feel like I can handle the stress of a job right now. Do what you need to do to get yourself better.

thanks for sharing your experience and advice Diane-in-Maine. I am sorry to hear that you have given up your job also - but it sounds like you will be better off in the long run. Maybe when you are feeling better you can find something that you can do that is similar - I know the social part of work is huge for me also. It is funny but when I hear of someone else taking time off work or quitting, I applaud that decision as it is just so important to look after your health. But for myself - hmmm don't knmow why it is such a dielemma.

thanks again and best of luck!

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Thanks GlutenFreeMamma:

Yes I am in the same position right now also - my manager wants a note from my doc saying I am well enough to work. I am verylucky to have such a great manager - she would rather I took all the time I needed to get well as she thinks this will help more in the long run. She has seen me struggling wtih my health issues for years now - from one problem to the next!

I know exactly what you mean abouto some family members pooh poohing celiac symptoms. I have one extended family member who is exactly like that but I just don't care - his reaction was - get over it and eat more rice.........well if only it were so simple!!

I am sorry to hear you have been off work and now unable to drive. I agree also if my illness was caught earlier I may not be quite as bad off - hopefully in time this will be better.

All the best to you and thanks fo much for sharing your advice to me - I really appreciate it so much~

Sunny :)

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I think a good q to ask yrself is can u afford to take off for that amount of time & will it put yr job in jeopardy? Only you can answer that. With the economy as bad as it is you really need to know if you will have a job when you go back. If it is secure & you are certain you will have a job then go ahead & take off. It really has nothing to do with being a wimp. It has to do with economics & if you think you can get better within that time frame. Best of Luck to you!

Hi Maximoo:

Yes your economic point is a very good one. I feel lucky to have very good benefits at work and would only lose a small portion of my income and my job would definitely still be there upon my return. However for me it is emotional - giving up vs fighting through......

thanks so much for your advice!!

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Great post/question Sunnydayz,

I have suspected MC myself for awhile though I am not sure. can you address that in this thread or send me a PM to tell me how/when you found out about the MC, symptoms, scopes etc?

I have questions about MC my self, my doc just did a biopsy and am waiting for the results

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I just wondered if anyone out there has taken an extended period of time off work ( two or three months)in order to heal from celiac and multiple symptoms and if you did - did this help you a lot?

I am 46 and was finally diagnosed after twelve years of symptoms some requiring hospitilization and also have microsopic colitis.

I went gluten free last july after being diagnosed by positive endoscope and blood test, but have not been overly careful with CC and everything else. Since March I have been getting steadily sicker and have missed days of work here and there, but now I have been off for two weeks and am considering taking a couple of months off to allow myself time to heal. Some days I feel okay and other days I am flat out on the couch barely able to focus or function with multiple celiac related symptoms - although I still am on dairy and someone suggested I go off that also to help which I plan to do.

I feel like a wimp even considering this as I have always coped and kept going while in pain or run down. My husband, family and friends are all encouraging me to take the time but still I am reluctant. i don't want to give in.

Am I a wimp or are there others there like me?

Thanks!!!

You are not a wimp, not at all.

I wish I was in a position where I could take that amount of time off and still keep my job.I have missed so much work that I am lucky to still have a job.

I am considering going to part time starting in the fall, the down side would be I would lose my health insurance :(

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Hi Quincy:

I know exactly what you mean when you say barely made it through the year. I decided to take time off when |I would look at people and not even recognize them any more my brain fog was so bad and memory loss so impacted. The stomach stuff I can manage as bad as it gets - but the neurological symptoms - they are what is doing me in.

yes I do have short term as well as long term disablity. (thank goodness)

as for the MC - this was diagnosed initially as ulcerative colitis as i was in hospital so sick with major weight loss, unable to eat very high white blood count and major blood in stool. The first set of test results from the colonoscopy came in as UC, however in a year when I still had symptoms and the medication was no longer working - my GI did an other scope and this time biopsy confirmed microscopic/collagenous colitis. He prescribed entocort for me and it works amazing. It put my MC into remission and now it only flares occasionally at which time I go back on it until it is under control again. the way I tell the difference between celiac or MC is more where my pain is - my colitis is more in the lower abdomen as it affects mainly the large intestine and my celiac causes more pain for me in my upper stomach. Also the D from MC for me is complete liquid and from gluten for me it is just very very loose. (Sorry to be descriptive and gross here) MC from what I understand usually does not have blood in the stool. Someone else sent me a link for microscopic colitis too which you should check out. My GI said it often goes hand in hand with celiac - so if you are suspicious at all you would definitely be at risk- ask your GI for a colonoscopy.

Sorry for the lengthy response, but hopefully this helps a little with the MC.

Thanks for the advice around time off work and around going dairy free - I will do this and- I am leaning closer and closer to admitting it may be time to deal with my health once adn for all and get the rest and recovery I need.

All the best~

Sunny :)

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I have questions about MC my self, my doc just did a biopsy and am waiting for the results

Here is the response from another post about MC. Hope this helps.

Not sure if the link will post, but if you google "microscopic colitis forum" it should be the first one that pops up, with the address containing "persky farms" something or other.

http://www.perskyfarms.com/phpBB2/index.php

People on here are just amazing to provide such kind advice and support.

I have just found this site and already it has given me so much information.

Cheers to you amazing celiac support people!! :)

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Hi Quincy:

I know exactly what you mean when you say barely made it through the year. I decided to take time off when |I would look at people and not even recognize them any more my brain fog was so bad and memory loss so impacted. The stomach stuff I can manage as bad as it gets - but the neurological symptoms - they are what is doing me in.

yes I do have short term as well as long term disablity. (thank goodness)

as for the MC - this was diagnosed initially as ulcerative colitis as i was in hospital so sick with major weight loss, unable to eat very high white blood count and major blood in stool. The first set of test results from the colonoscopy came in as UC, however in a year when I still had symptoms and the medication was no longer working - my GI did an other scope and this time biopsy confirmed microscopic/collagenous colitis. He prescribed entocort for me and it works amazing. It put my MC into remission and now it only flares occasionally at which time I go back on it until it is under control again. the way I tell the difference between celiac or MC is more where my pain is - my colitis is more in the lower abdomen as it affects mainly the large intestine and my celiac causes more pain for me in my upper stomach. Also the D from MC for me is complete liquid and from gluten for me it is just very very loose. (Sorry to be descriptive and gross here) MC from what I understand usually does not have blood in the stool. Someone else sent me a link for microscopic colitis too which you should check out. My GI said it often goes hand in hand with celiac - so if you are suspicious at all you would definitely be at risk- ask your GI for a colonoscopy.

Sorry for the lengthy response, but hopefully this helps a little with the MC.

Thanks for the advice around time off work and around going dairy free - I will do this and- I am leaning closer and closer to admitting it may be time to deal with my health once adn for all and get the rest and recovery I need.

All the best~

Sunny :)

thanks for the info. I also can tell when I got gluten or colitis cause the pain is higher up in abdomen with celiac. I just joined the MC forum and they have been great over there.

I have never had a problem with severe weight loss and D or bloody D. so not sure if this would be CC or LC at all.

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For years and months I lay on the living room floor in from of the television, nausea and sick as a dog. The VA Hospital Medical Personnel were telling me it was all in my head and to think positive thoughts. It would go away with positive thinking they told me over and over again. Well, it did not go away. I was given narcotic medications for Anxiety and Epilepsy. Asthma medications and every thing in between. This was to get rid of the Celiac Disease symptoms back then in the late 1980's and 1990's. The VA Hospital did everything they could to discourage me going to the civilian doctors about this diseases of mine. Then, 5 years ago, they finally admitted that it was Hyperinsulinism Hypoglycemia and Celiac Disease after I had a civilian hospital run the tests on me. They could have saved me allot of damage and worry if they would have given me the tests early but, they were worried about the compensation that I would have to be paid. The US Govenment litterly were trying to kill me with medications.

I feel better these days after being treated for Hypoglycemia and Celiac Disease than I have felt in years. I am still under weight but, I feel so much better. I still have to test my glucose every 4 hours during the day and night but, I still feel better. I go into hypoglycemic state once a day every day though at present time. Glucose drops down to 55 mg/dl sometimes and at other times it only drops down to 60 - 70 mg/dl.

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Sunny, you are not a wimp!!! I know exactly what you are going through, I was diagnosed last September and I still kept on working, with that whole I am "Superwoman" mentality, however my body had other plans, I did have a few sick days when first being diagnosed, then ended up in the hospital in December, when my husband came home and found me on the floor passed out. I was basically trying to do everything I did before without letting my body heal, so after another trip to the ER in January my doctor said that's it, your are done until we can get you better. And yes I am still off work, do I feel guilty at times, you bet I do, but after being sick for so long, I have come to the conclusion that my health and well being are what I need to concentrate on. For so many years I have been sick and to think in a short time I could feel 100% is unrealistic.

I am very lucky to work for an organization who is holding my job for me, and a fantastic family who supports everything I do. As my husband said, I am worth more then the paycheck I bring home. Wishing you the best of luck and alot of hugs as you move forward on your journey to good health. B)

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I have sure wanted to not work some times. Last year was pretty tough for me as far as brain fog and lack of sleep. I felt really bad about my job performance last year but there was nothing I could do about it. This year has been better after making some more changes to my diet. I guess I am saying I do indeed understand and agree that taking some time off makes a lot of sense. This can be a very hard condition to deal with in a lot of ways.

Karl,

Sorry to hear about your lack of support from the VA. Just so you know, it is not unusual for doctors to miss celiac disease. They do it all the time. VA or regular doctors, they just don't get it. The average number of years to diagnosis I keep seeing is 9. That's 9 years before it is figured out. Heck, m sister figured out I had celiac from my symptoms, my doctors never did.

I hope your symptoms continue to improve on the gluten-free diet. It can take a while but it sometimes people have surprising recoveries too.

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If you can afford to stay home and your job won't be at risk then do it. I'd love to take a month or two off but I would lose my job and my health insurance. I take days off now and then as I get sick all the time but it takes so long to build up sick leave that I have to save it for really sick days. So far I've worked through mono, bout after bout of strep, and repeated outbreaks of shingles. Thank God I have a low key desk job! I do wonder if I had been able to take a few months off to recuperate would I still get sick so often and stay so very exhausted? In light of my experience I'd say if you have the opportunity then take it and regain your health! Good luck!

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thanks for the info. I also can tell when I got gluten or colitis cause the pain is higher up in abdomen with celiac. I just joined the MC forum and they have been great over there.

I have never had a problem with severe weight loss and D or bloody D. so not sure if this would be CC or LC at all.

Hi Quincy - the only time I had bloody D and severe weight loss was when I was diagnosed with ulcerative colitis which was a year before the MC. They only did another scope cuza my sysmptoms just were not clearing up but they were different from the year before. From my understanding there is not usually blood in the stool with MC and I think MC can be either constipation or D. glad you are getting teh info you need :)

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I have sure wanted to not work some times. Last year was pretty tough for me as far as brain fog and lack of sleep. I felt really bad about my job performance last year but there was nothing I could do about it. This year has been better after making some more changes to my diet. I guess I am saying I do indeed understand and agree that taking some time off makes a lot of sense. This can be a very hard condition to deal with in a lot of ways.

Karl,

Sorry to hear about your lack of support from the VA. Just so you know, it is not unusual for doctors to miss celiac disease. They do it all the time. VA or regular doctors, they just don't get it. The average number of years to diagnosis I keep seeing is 9. That's 9 years before it is figured out. Heck, m sister figured out I had celiac from my symptoms, my doctors never did.

I hope your symptoms continue to improve on the gluten-free diet. It can take a while but it sometimes people have surprising recoveries too.

I was born with it and never realy knowed it. I was born way back in 1953, no doctor really knew it that far back in history. I was also born with Hyperinsulinism Hypoglycemia back then too. No doctor knew of it accept the research doctor back in the late 1950's. That is why I am in this hospital bed today. Litterly dieing.

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You are not a whimp at all, Like Bonnie Blue I stayed working thinking that was wonder woman and was perfectly fine and able to do anything. But my body wouldn't let me function the way I needed to. I worked as an I.T. tech in a hospital and my brain would fog up, and the exhustion and pain in my body would be so bad that I thought to myself everyday that I was not going to get through the day. I had to quite my job to move down south to be with my Marine husband. I wasn't able to find a job here in Georgia, so I have been home for 7 months. It is the best thing that could have happened to my poor beat up body. If you have the means of quiting your job until your figure out your body, celiac disease, and health what has been done to it for possibly years, then by all means, you need the rest!

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Not a wimp at all! I have had to have lots of time off, and can't even consider getting a job right now, even a simple walk into town to look for jobs sent me into a dizzy spin, had to lie down in case i fainted. Can't exactly work in that condition!

My doctor said she was glad i didn't have a job because it reduced the stress which meant my healing process would hopefully be shorter and she was more than happy to sign me off work. I hope it all works out for you!

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Thank you to everyone who replied to my call for help with such empathy and support. You guys are amazing. WOW :)

As of today, I have officially taken a sick leave from work leaving my return date open ended right now.

It feels very odd to give in to this as I do love my job, but I am hoping in the long run this will be time well spent. I feel very fortunate to have this opportunity and such a supportive family behind me - with only the odd pooh pooher here and there LOL

Here's to getting on top of this annoying disease and getting our lives back!!!

Thanks again to everyone!!

:) :) :)

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Thank you to everyone who replied to my call for help with such empathy and support. You guys are amazing. WOW :)

As of today, I have officially taken a sick leave from work leaving my return date open ended right now.

It feels very odd to give in to this as I do love my job, but I am hoping in the long run this will be time well spent. I feel very fortunate to have this opportunity and such a supportive family behind me - with only the odd pooh pooher here and there LOL

Here's to getting on top of this annoying disease and getting our lives back!!!

Thanks again to everyone!!

:) :) :)

its great to hear of your decision and that you are able to swing the short term disability. Looking back I wish I had done the same because I was barely hanging on getting up at 6 am every day when my body was aching constantly. Good for you !!

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No, you are not a wimp. I had very mild symptoms before going gluten-free and can tell you I really don't think I could work outside the home. Now I am a Stay at home mom of 3 and life can be busy but I can adjust my schedule on days when I am so tired I could scream. Some days I don't want to get up because I am so tired that I consider keeping my school age kids home because I am just too tired. I can't imagine having to go to work all day when I am so tired.

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You are Not a wimp. At all! I am retired and have been since I got sick. I often wonder how I would have ever managed if I was still working and this sick. No way. If you can take the time off then do it. Concentrate on healing yourself. Wimp? No way!

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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