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So Confused - Could This Be Something Other Than Celiac?


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#1 ErinIsabel

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Posted 04 September 2012 - 12:04 PM

Hi everyone... so I posted a few months back after having a c-section with my 2nd child and becoming extremely ill 3 weeks later. My doctors ran every test in the book and finally 4 weeks later my GI specialist came back telling me that my tissue transglutaminase was at 170 with 1-14 being normal and that I needed to stop eating gluten immediately to see what would happen. I was leaving the next day with my 7 week old baby to be with my parents in another state to help me get better, and since i had been basically unable to eat anything for the previous 4 weeks (while simultaneously nursing my baby), he told me not to worry about getting the biopsy, to just go gluten free and see what happened. He also said that although the test pointed towards celiac, he still 'didn't think i had it'. He seemed to think something entirely different was going on, although he said he didn't know what it was.

Once on the diet, I felt 120% better - within days. Better than i had felt in 5-10 years - I didn't even know i wasn't feeling well most of that time! However, it's now been 2 months since i started the diet and i'm starting to not feel that great again. Not like when i was super sick after my baby was born, but back to how i felt before I even knew i was sick. So not necessarily 'sick' - just not great. I've also recently had a staph infection on my scalp behind my ear - it's come back 2x already now - we can't seem to get rid of it. Prior to having the c-section, I was a completely healthy person - I had never even been to the hospital for any reason in my 34 years of life. Now, since my baby was born 4 months ago, i've been to the hospital and/or ER SEVEN times (all surrounding either my celiac symptoms or this staph infection).

I can't figure out why i'm starting to feel not-so-awesome... i'm still sticking to the gluten-free diet very strictly. I'm feeling like maybe i should try eating some gluten to see what happens. Maybe my GI Dr was right and i really don't have celiac? Maybe this is all due to something else that no one is catching? Has anyone heard of anything that would link my celiac symptoms to a staph infection? I'm just so confused and feel like every doctor i see is concerned with my current situation but doesn't want to hear about everything that has happened and help put all the pieces together. Or maybe i'm just in denial? I found the first month or so of being on the diet not that bad - it was new and it was easy to be positive about it and just be happy I was feeling so amazing. but now that i'm starting to feel bad again and the newness of the diet has worn off... i'm starting to feel sad/frustrated/mad - I hate feeling like this. :( Sorry for the sob story. I know we all have to deal with this - I just feel very confused about everything - my family is pressuring me to try some gluten just to see what happens. I know everyone on here usually advises against that. however, is this situation different since my GI admitted he doesn't really think i have celiac?? I just want/need to figure out what's going on with me.

Thanks in advance for any advice. :)
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#2 ravenwoodglass

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Posted 04 September 2012 - 01:26 PM

You may be getting some cross contamination. We often become more sensitive to very, very tiny amounts after we have healed a bit. Has anything changed in the last couple of months? Are you trying to eat mostly whole unprocessed foods? Are you eating in restaurants? Any new toiletries or hair care products? Those need to be gluten free IMHO. Any remodeling in your home? Do others eat gluten at your home and if they do eat gluten do you have your own condiments, nut butters, butters, jellies, toaster, strainer for your gluten-free pastas etc?
Your positive blood work and recovery when you went gluten free are significant. If you do decide to challenge gluten eat some at least 3 times a day for at least a week to see if you react. It would be a good idea to have your positive blood test rerun also before you challenge. If those numbers have gone down, even if not into negative ranges, that is a pretty good indication that you need the diet.
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"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 pricklypear1971

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Posted 04 September 2012 - 01:30 PM

What did they give you for the staph infection and what are your relapse symptoms?

Did they give you antibiotics? Are you having GI issues? Are you taking probiotics? Digestive enzymes?
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 Takala

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Posted 04 September 2012 - 02:14 PM

Just read thru your old posts.

You said previously that your G.I. doctor told you it was likely celiac, but did not recommend a biopsy at that time, just go gluten free and come back in several months for a consult.

In the current world of medical diagnosis, a G.I. doctor cannot formally diagnose you with celiac disease unless they have a positive blood test AND a positive biopsy. This does not mean that you don't have celiac, but it does mean that you may have skipped over for the positive diagnosis part, because based on your symptoms and the positive blood test, the GI doc was fairly sure that you would then respond to the gluten free diet and feel better. He was being practical and not wanting to put you thru more tests when he thought he had your solution. Note that he/she DID tell you to come back for a review, which you have not indicated that you have done.

After being gluten free for a time, two things happen: 1. Your biopsy, if you then get one, is likely going to be negative, and 2. You become more sensitive to smaller and smaller amounts of gluten.

In fact, if you're becoming more sensitive to gluten, that is usually a sign you really are celiac, as opposed to a normal person, for whom it does not matter.


As for that "staph" infection on your scalp, there is a skin form of celiac that shows up as a rash called D.H., which, when inflamed, can get a secondary infection. If you haven't already, you need to go to the DH forum subsection on this site pronto and start reading on what to do to get rid of DH. Go to your toiletries cabinet NOW, and start reading labels and get rid of any and all personal care items that have wheat (triticum) and oats (sativa) in them. Oats are typically cross contaminated with wheat. Do not put that crap on your sensitive skin !!! :angry: :ph34r: For the time being, also start using plain salt instead of iodized salt, because iodine can aggravate this while you are in the active, reactive phase.

Are your antibiotics gluten free ? Does the pharmacy where you get them have you marked down as having a wheat/rye/barley/oat allergy when they ask what you are allergic to, before dispensing any scripts ? Just "gluten intolerant" does not get their attention.

Oh, and has anyone biopsied the skin next to the ongoing rash/infection, for DH ? I bet not !!! See, if you had gone back to the GI, he might have shunted you over to a dermatologist who could do this. What are you waiting for ? That could be your positive biopsy. Call the doctor who has been treating the rash/infection, and ask if they did that. Answer = no, they didn't think of that, you say, why the freaking h*** not, only paraphrased a little more nicely.

Pet foods - you don't have a resident cat or dog eating great gobs of gluteny pet food, then licking you, do you ? Get those house pets off of gluten, if you are reacting to their saliva.


my family is pressuring me to try some gluten just to see what happens. I know everyone on here usually advises against that.


Yeah, for the same reason that we tell people not to chow down on rat poison, just because somebody's family members feel "inconvenienced" by the amount of care that has to go into keeping a mixed household of gluten and non gluten eaters. Parents of adults can be particularly stubborn about accepting that one or more of their offspring now has severe auto immune reactions, which can be set off by eating the normal junque food from "Cracker Barrel" or going thru the fast food drive thru line. They don't "get it," because they haven't been laid out sicker than a dog for an entire week, by one small eating mistake.
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#5 eatmeat4good

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Posted 04 September 2012 - 02:26 PM

Perhaps the staph infection is a DH rash, the skin form of Celiac called Dermatitis Herpetiformis. I hope they have cultured the rash and know that they are in fact treating Staph and that it isn't DH. But if it is DH, then you should know that even very tiny traces of gluten will cause it to remain active. And some with DH need to limit iodine since it can keep the antibodies active in the skin. This will need to be discussed with your Dr. since you are nursing and you are probably already deficient in vitamins. I hope you are supplementing with gluten free vitamins.

People very often have a miraculous recovery followed by a return of illness as their body reacts to smaller and smaller amounts of gluten. If others in the house eat gluten you can easily be contaminated. People baking with flour could make you sick if you breathe and then swallow it. There are numerous cross contamination hazards with Celiac. You will have to eliminate them in order to continue healing.

One of the issues with poor wound healing and Celiac disease is the vitamin deficiencies and malabsorption. These two make it difficult for our bodies to use the vitamins we ingest in order to heal. The body is already stressed from childbirth, nursing and Celiac, and now the Staph infection, (or DH Celiac) whichever the case may be. I hope you will read about DH and mention it to your Dr. to see if it is a possibility. One of the reasons it is reasonable to suspect is the location behind the ear. Although DH can occur anywhere, the hairline is a common presentation.

DH can take an extremely long time to heal. I have DH and was treated for chronic impetigo, fungus, infections, anti-virals, and numerous medications for these. The rash never tested positive for a bacteria, but it so appeared to be impetigo that it was treated as such. Make sure they have cultured your rash. It will make all the difference in healing. If it is staph, of course it could recur because your body is fighting to heal from the Celiac.

I hope you feel better soon. Try to look for ways you are getting contamination, many people have to become more and more strict the longer they are gluten free. The body just reacts stronger for some than for others when gluten CC is encountered. You may be one who does.

Good luck and keep reading. Check out the DH forum here to see if anything is consistent for you regarding the rash.
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#6 deb445

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Posted 04 September 2012 - 04:12 PM

Once on the diet, I felt 120% better - within days. Better than i had felt in 5-10 years - I didn't even know i wasn't feeling well most of that time! However, it's now been 2 months since i started the diet and i'm starting to not feel that great again.

I can't figure out why i'm starting to feel not-so-awesome... i'm still sticking to the gluten-free diet very strictly.


I wonder if your gluten free diet is heavy on corn?
Corn has gluten also, which some people are sensitive to.

Just a thought.

I hope all is going well with the new little one.
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#7 Gemme

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Posted 04 September 2012 - 07:22 PM

Hi everyone... so I posted a few months back after having a c-section with my 2nd child and becoming extremely ill 3 weeks later. My doctors ran every test in the book and finally 4 weeks later my GI specialist came back telling me that my tissue transglutaminase was at 170 with 1-14 being normal and that I needed to stop eating gluten immediately to see what would happen. I was leaving the next day with my 7 week old baby to be with my parents in another state to help me get better, and since i had been basically unable to eat anything for the previous 4 weeks (while simultaneously nursing my baby), he told me not to worry about getting the biopsy, to just go gluten free and see what happened. He also said that although the test pointed towards celiac, he still 'didn't think i had it'. He seemed to think something entirely different was going on, although he said he didn't know what it was.

Once on the diet, I felt 120% better - within days. Better than i had felt in 5-10 years - I didn't even know i wasn't feeling well most of that time! However, it's now been 2 months since i started the diet and i'm starting to not feel that great again. Not like when i was super sick after my baby was born, but back to how i felt before I even knew i was sick. So not necessarily 'sick' - just not great. I've also recently had a staph infection on my scalp behind my ear - it's come back 2x already now - we can't seem to get rid of it. Prior to having the c-section, I was a completely healthy person - I had never even been to the hospital for any reason in my 34 years of life. Now, since my baby was born 4 months ago, i've been to the hospital and/or ER SEVEN times (all surrounding either my celiac symptoms or this staph infection).

I can't figure out why i'm starting to feel not-so-awesome... i'm still sticking to the gluten-free diet very strictly. I'm feeling like maybe i should try eating some gluten to see what happens. Maybe my GI Dr was right and i really don't have celiac? Maybe this is all due to something else that no one is catching? Has anyone heard of anything that would link my celiac symptoms to a staph infection? I'm just so confused and feel like every doctor i see is concerned with my current situation but doesn't want to hear about everything that has happened and help put all the pieces together. Or maybe i'm just in denial? I found the first month or so of being on the diet not that bad - it was new and it was easy to be positive about it and just be happy I was feeling so amazing. but now that i'm starting to feel bad again and the newness of the diet has worn off... i'm starting to feel sad/frustrated/mad - I hate feeling like this. :( Sorry for the sob story. I know we all have to deal with this - I just feel very confused about everything - my family is pressuring me to try some gluten just to see what happens. I know everyone on here usually advises against that. however, is this situation different since my GI admitted he doesn't really think i have celiac?? I just want/need to figure out what's going on with me.

Thanks in advance for any advice. :)


I am on Gluten free for 6 months , even now i find hidden gluten cc in my diet , few days back via this forum i came to now it was Tea bag making me sick, before that it was corn, even before i realized it was Gluten free chips, sugar coated Vitamins(glutened) ............. what i mean is it is GLUTEN one way or other , gluten is so stupid it knows 1001 way to dodge us , but people like here on this form we won't let him win.
There may be some other problem but staying Gluten Free is always Healthy.
Good Luck


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#8 ErinIsabel

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Posted 04 September 2012 - 07:27 PM

Has anything changed in the last couple of months? Are you trying to eat mostly whole unprocessed foods? Are you eating in restaurants? Any new toiletries or hair care products? Those need to be gluten free IMHO. Any remodeling in your home? Do others eat gluten at your home and if they do eat gluten do you have your own condiments, nut butters, butters, jellies, toaster, strainer for your gluten-free pastas etc?


Thanks ravenwoodglass... I've only been on this diet now for a total of about 2.5 months so the answer to your question is yes, EVERYTHING has changed about my diet in the last few months :) But, I do feel like i've been diligent about my own diet (eating almost 100% whole foods only) and since going gluten-free, i haven't changed anything. I have been eating in restaurants.... however, I've feel like i've been very very careful about the restaurants i go to and how i order, and I never feel worse or different after eating out. I do think we can be more careful at home. My 2.5 year old and husband are not gluten-free... there is bread constantly out on the counter that i'm cleaning up and I make sandwiches and other gluten-y foods for them both on occasion - is this out of the question now? I am realizing i need to purchase my own condiments.

What did they give you for the staph infection and what are your relapse symptoms?

Did they give you antibiotics? Are you having GI issues? Are you taking probiotics? Digestive enzymes?

Thanks pricklypear1971... The staph infection was originally just a small 'pimple-ish' type thing that became so painful that I ended up in the ER over a weekend. The ER doc didn't know what it was and just drained and packed it and told me to come back 2 more times to have it drained and packed again. He also put me antibiotics for 7 days (i can't recall at the moment which one). It was almost healed after about a month - at which time a new one, exactly the same thing, popped up right next to the old one. this time i went to my general practitioner (a very smart woman who i trust completely and who originally sent me to the GI specialist - without her, who knows where i'd be) - upon looking at it, she proclaimed that it was a staph infection and immediately put me on antibiotics and sent me to a dermatologist. The derm did do a biopsy of the new infection - and it came back positive for staph. I don't know if they did a test for DH, but i plan on calling tomorrow to find out. I was originally put on something called Bactrim which i had an awful reaction to (heart racing, insomnia, anxiety) and was switched to Keflex which i've now been on for 2 weeks. my dermatologist prescribed me another six weeks of it, which i will start tomorrow. I am having GI issues, mainly abdominal pain. I am taking probiotics - one that my GI specialist put me on at the very beginning of all this. I'm not sure what Digestive Enzymes are...?

Just read thru your old posts.

You said previously that your G.I. doctor told you it was likely celiac, but did not recommend a biopsy at that time, just go gluten free and come back in several months for a consult...Note that he/she DID tell you to come back for a review, which you have not indicated that you have done... If you haven't already, you need to go to the DH forum subsection on this site pronto and start reading on what to do to get rid of DH...Are your antibiotics gluten free ? ...Oh, and has anyone biopsied the skin next to the ongoing rash/infection, for DH ? I bet not !!! See, if you had gone back to the GI, he might have shunted you over to a dermatologist who could do this. What are you waiting for ? That could be your positive biopsy. Call the doctor who has been treating the rash/infection, and ask if they did that. Answer = no, they didn't think of that, you say, why the freaking h*** not, only paraphrased a little more nicely.


Takala - thank you for you note. My GI did tell me that although my tests indicated that it was celiac, he still did not believe that i was. weird? anyways, maybe that's besides the point now - I haven't gone back to my GI yet, since i've only been on the diet now for 2.5 months. I was planning on going back to him around 3-4 months, but you bring up a good point - i think i'll bump it up seeing as i'm having these ongoing issues. thank you for the advice on salt and toiletries - i'll go check all of that right now. My antibiotics are all gluten free - every time i go to the pharmacy or have anything prescribed, i tell them i'm celiac and that under no circumstance can i have gluten. They all seem to take it very seriously and check and double check and show me where it says that it does not contain gluten -so i feel confident there. In terms of the positive biopsy - are you saying i could get a positive reading from my staph infection for celiac? Or just for DH? Could it be both DH and staph? I thought the only place to get a positive biopsy for celiac was from the small intestine? As you may have read previously in my post, i did get the infection biopsied by a derm - i'm not sure if DH was included in that biopsy but i'm calling tomorrow to find out.

Eatmeat4good - thank you for your note. You gave me a ton of great advice and information - than you. Can the infection be both staph and DH?? Since it is definitely positive for staph, i wonder if it can be DH as well. I'll call tomorrow to find out - seems like i have some research to do on the DH board tonight! I am supplementing with gluten-free vitamins, thanks for the recommendation.

Deb445 - thanks - interesting, I never knew corn had gluten!! I do eat it quite a lot, it's one of my favorite foods :( I guess I should try to eliminate it to see if it makes a difference.

Everyone - thank you. More than anything, I'm just extremely frustrated. I feel like i've already changed my lifestyle so so much and the fact that it's not enough is completely overwhelming. In the midst of trying to raise my 2.5 year old and my 4 month old, i just feel like i don't have TIME for all this (i know - i'm not the only one with these issues... i'm just having an 'all about me' moment. i know it will pass - it just seems impossible right now). thank you so much for all your help, advice, and support. I really appreciate it and feel like it would be SO much harder without all of you and your knowledge.

Erin
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#9 kareng

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Posted 04 September 2012 - 07:43 PM

If you have been doing things like sharing condiments and PB and eating out, you haven't gotten the gluten-free diet down yet. There is a learning curve involved. Give a real gluten-free diet a fair shot for a couple of months and see if that helps.


all grains have "gluten". Celiacs re-act to what we commonly call gluten - the gluten protein of wheat, rye or barley. Some people, Celiac or otherwise, can have a problem with corn.
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#10 MitziG

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Posted 05 September 2012 - 02:53 AM

I am going to be brutally honest because I sense you are looking for a way out- and you aren't going to find it.

You have celiac. No, your doctor didn't follow protocol in testing, but the blood tests are very accurate and your positive response to the diet confirms 100% that you are celiac. No ifs, ands or buts hon.

Sadly, celiac is a whole ball of ongoing health issues and for most of us, going gluten free does not magically make them go away.

What happened to you is typical. Initially, just eating gluten free was enough. Your body was so sick that the relief was immediate and profound. But defying logic, as usual, it didn't last. Welcome to the club.

As your immune system recovered it became hyper- vigilant. It is doing its job. It knows that gluten kills you, so its mission is to kill it first. Every teeny molecule. Living in a shared household with gluten eaters is almost a guarantee for cross contamination. Everything the above posters said is 100%. You need to go thru every item in your home looking for wheat- from Grandma's hand lotion to baby's teething biscuits. If they touch it, you touch it...and you put your hands in your mouth. Bam. Wash wash. As for staph, yes, get the biopsies done for DH. And with all the antibiotics, your gut bacteria are screwed up, start taking probiotics. Now.

Lastly, do not think for a second that you should humor your ill-informed relatives and "try a little." Your life is on the line. They don't understand this disease. They don't understand that a little gluten may not make you sick, but may set an irreversible chain of events in motion that leads to your death.

Do they want to care for you when you have lupus? Or MS? Or lymphoma? Or rheumatoid arthritis? Or type 1 diabetes? Are you prepared to have them raise your child because you are bedridden the rest of your life with dozens of chronic autoimmune issues? Because THAT is what they are asking you to do.

Now, you can put yourself thru a pointless gluten challenge that may or may not confirm what has already been confirmed. And you can risk everything. Or you can accept the fact that you have this, that continuing health struggles are going to be par for the course, and step it up a notch. Your choice.
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#11 GFinDC

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Posted 05 September 2012 - 05:10 AM

Hi Erin,

I am sorry you aren't feeling well again. Your experience is not unusual though as far as feeling better and then feeling worse again. The gluten-free diet doesn't get rid of celiac disease. It does give the body a chance to rest from the attack and heal. The immune system can react to very small amounts of gluten, and the reaction can last several weeks once started. If it didn't work that way, we would die easily from any bad little bug that came around. So it is hyper-vigilant protecting us from those things. Su you really need to review your diet and other things about your life to see if there is hidden gluten sneaking in somewhere.

Kissing a gluten eater is a sure way to get sick if they haven't brushed their teeth and gargled with at least water after eating gluten. Children's hands covered in invisible gluten from a sandwhich and then put on your face are getting it awful close to your mouth. Frequent hand and face washing can help. It might be better to just take the whole family gluten-free for a few months until you get the hang of things and they do too. There are gluten-free breads available and also rice wraps and corn tortillas. Shared toasters are a bad thing too.

Vitamins and meds should be confirmed by you as well as the pharamacy. Don't trust your health to others if they don't understand the disease. You can do a search online or right on this forum for meds and vitamins. Or call the maker and see what they say.

Digestive enzymes are available in several forms. Betaine HCL with pepsin is a good one and there are many others. Some are plant based enzymes, others are animal derived.

For DH they take a biopsy sample from the skin next to a lesion/pimple. If you have DH you have celiac, as only celiacs get that skin rash. So it is s good diagnostic too.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 ErinIsabel

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Posted 05 September 2012 - 01:45 PM

Ok. Maybe I AM looking for a way out of this... thank you all for your 'brutal honesty' :) I am trying (hard!) to accept that I have celiac... but something in the back of my mind keeps telling me 'maybe you don't have it!'... I know this is probably a coping mechanism or something. I am going to recommit myself to this and start again from scratch. I just want to feel better. I just can't believe this is happening and that it is SO much harder than anyone thinks. I keep hearing, 'oh there are SO MANY gluten-free options now!! It should be easy!' and 'thank GOD it wasn't something serious!' - oh, and 'I'm trying out your diet - i need to lose a few pounds!' - like it's no big deal. Just a diet i'm trying out! RIGHT. I just want to cry when people say these things and I'm just too tired to explain to them that NO, it's not easy, YES it is serious, and NO, you don't just 'try it out' to lose a few pounds. it's a constant battle (at least for me, right now...i know/hope it will get easier/better with time). I'm just very very tired and frustrated. Thank you everyone for your advice and responses. I guess I needed a dose of reality... and i got it.
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#13 pricklypear1971

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Posted 05 September 2012 - 02:10 PM

Ok. Maybe I AM looking for a way out of this... thank you all for your 'brutal honesty' :) I am trying (hard!) to accept that I have celiac... but something in the back of my mind keeps telling me 'maybe you don't have it!'... I know this is probably a coping mechanism or something. I am going to recommit myself to this and start again from scratch. I just want to feel better. I just can't believe this is happening and that it is SO much harder than anyone thinks. I keep hearing, 'oh there are SO MANY gluten-free options now!! It should be easy!' and 'thank GOD it wasn't something serious!' - oh, and 'I'm trying out your diet - i need to lose a few pounds!' - like it's no big deal. Just a diet i'm trying out! RIGHT. I just want to cry when people say these things and I'm just too tired to explain to them that NO, it's not easy, YES it is serious, and NO, you don't just 'try it out' to lose a few pounds. it's a constant battle (at least for me, right now...i know/hope it will get easier/better with time). I'm just very very tired and frustrated. Thank you everyone for your advice and responses. I guess I needed a dose of reality... and i got it.


Oh hon, here's another dose.

You just had a baby. The fact that you are able to get as far as you've gotten is a freaking miracle.

We all have our moments of doubt and anger and fight about this disease, and having a doctor telling you it isn't Celiac when you had a high positive on an antibody test is ridiculous. He shouldn't have said that without a biopsy and a gluten-free trial. But alas, here you are. The above posters are correct that if you had a dramatic benefit from going gluten-free that's the best diagnostic of all.

Take the above advice, dig deeper. Little glutenators at home don't help. Eating out doesn't help. If you eat out, screen the place carefully by gathering reviews from other gluten-free'ers online or from a local Celiac group.

The antibiotics you are taking are probably exacerbating the gi troubles. Definitely see if your derm will biopsy for DH to exclude that (antibiotics won't help it at all). Your body has taken lots of hit from Celiac and from having a baby...staph is opportunistic and weakened ai systems and underlying conditions are a risk factor. You may very well have a stubborn infection.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 GottaSki

GottaSki

    "The past is the past...I've got places to be."

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Posted 05 September 2012 - 03:19 PM

I just want to feel better. I just can't believe this is happening and that it is SO much harder than anyone thinks. I keep hearing, 'oh there are SO MANY gluten-free options now!! It should be easy!' and 'thank GOD it wasn't something serious!' - oh, and 'I'm trying out your diet - i need to lose a few pounds!' - like it's no big deal. Just a diet i'm trying out! RIGHT. I just want to cry when people say these things and I'm just too tired to explain to them that NO, it's not easy, YES it is serious, and NO, you don't just 'try it out' to lose a few pounds. it's a constant battle (at least for me, right now...i know/hope it will get easier/better with time). I'm just very very tired and frustrated.

We have all had similar frustrations - you are not alone. The transition to being completely gluten-free is very difficult - add to that you just delivered a baby and are likely not getting regular sleep. You will have more emotional moments - heck I was crying in the aisle at the grocery store out of frustration while reading all the itsy bitsy ingredient labels during my first few months and I wasn't caring for a newborn!

Dedicate yourself to accepting the diagnosis and removing all possible sources of gluten. Make sure you let your family know that although you may have been questioning the diagnosis, you have now educated yourself and found that with your blood test result there is no doubt that you have Celiac Disease and must stay gluten free for life - it's hard but stay strong, they are learning along side you and will likely be far more understanding as time passes and you gain health by remaining consistently gluten-free. Not to worry IT DOES GET EASIER with time.

Grab sleep where you can and be good to yourself.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 MitziG

MitziG

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Posted 05 September 2012 - 04:16 PM

They don't get it. And they neverIt IS hard- no doubt about it. And I hear you with the whole thing of people saying how many options there are. Cuz yes, I can now buy ridiculously over-priced dried out gluten-free baked goods. Woo hoo. They don't get it. And they never will. But you will learn to tune them out and to find so much comfort in being able to take charge of your health. And eventually, you will just pity those who are "so glad they can eat gluten" and have no idea that it is probably responsible for their OWN health issues. It DOES get easier. And you WILL feel better. Just hang in there.
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