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Going Gluten Free...welcome Day 40!
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I am so new to all of this, today is day 40 going gluten free, with a few unwanted glutenations along the way! This is a whole new world, a whole new life! In short I have been sick for along while but 5 years with symptoms I beleive related to Celiac Disease. I have had many tests done over these years,by many doctors trying to figure out what is "wrong" with me from cat scans, blood work, x-rays, MS testings,spinal taps, hormone testing, gall bladder testing....not one doctor ever mentioned to me that maybe I had an allergy or an intollernce to foods. In short about two months ago I sat down to rock my 1 year old, turned on the TV and there was Dr.Oz with guest Elizabeth from The View, talking about Celiac Disease and the symptoms, as I sat and watched the symptoms being explained I could check off every single one of them and then some...(if anyone is interested I could list them for you)right then a light bulb went off in my head...this was a sign nothing to loose, maybe something to gain, but absoutlly nothing to loose!! So that was it for me the rest of the day I watched what I ate, and then the next day and every day since then...after 72 hours the gall bladder pain and stomach pain started to subside, I had a burst of energy, I was running with my 3 year old on a "walk", I could hug my husband without pulling away because it was to uncomfortable...I can go on and on...but the best thing is I am feeling better then what I had in a very long time, with no help from the doctors! (Still thinking of billing them the $7K in medical bills accumulated/ but they are good samaritians after all, right!) I am by no means healed, but I feel as if I am healing!

So about two weeks ago I went to see an allergist so excited to get this show on the road...I want to know everything so I can fix it, and move on. In short the allergist came up empty handed..I had NO blood work done for the Celiac Disease because they informed me that I would have to be digesting it for the tests to come out correctlly. So my friends this is a PROBLEM for me...because NO way would I take a million dollers to feel the way I had felt before all of this.

Does having the underlined diagnosis sought out worth my pain and suffering?

What if it showed negative? But what if it shows positive?

I have a husband that is a gluten 'LOVER', 5 kids that go nuts for cakes/brownies/breads...you name it they digest it!

The two times that I am well aware of that I was contaminated was not pleasent for me or for them but I am DROWNING in possiable contaminations here in this household...Do I move out...?LOL

I just want support/someone who gets all of this, gets me. My family just does not understand as I am making there turkey sandwhiches with plastic baggies over my hands and itching like crazy, my throat swollen and snot draining, foggy head as Im pouring there gravy on there mashed potatoes...later washing all the dishes...

Is having the diagnois going to be worth it, is my main question, I guess,? Does that help with support in the long run through all of this? Do your families/households just take it out completelly? How do I cook for all of them while I feel like S*&%, with a smile on my face knowing what I am going to feel like by the end of there dinner!

AHH, THANK YOU FOR LISTENING TO MY BABBLES!

Cathleen

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Welcome!

Very glad to hear you are feeling better on a gluten-free diet. Am am sad to hear your family is not supportive. I have to ask -- have you told them how much better you feel off gluten/conversely how bad you feel when just handling gluten for them? I know I tend to roll along saying everything is fine, until I can no longer roll.

If you are doing all the cooking - you should be able to replace a lot if not all the menu items your family is used to. Our gravy tastes just the same as it did with gluten-free flour and betty crocker brownies with chocolate chips added are a favorite with my teens. We have replaced everything we ate before going gluten-free and many items taste better -- it just takes time.

Hang in there - as for a firm diagnosis talk to your husband - would he support you more with a diagnosis? Make sure you let him know that you will need to ingest a substantial amount of gluten for a few months (now that you have been gluten free this may hit you harder than ever before).

I'd vote for just staying gluten-free without diagnosis, yet completely understand if you wish to get a firm diagnosis.

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I'm a week in-- can't wait for 40 days! Congrats on the new you.

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If you are comfortable with staying gluten-free with a diagnosis, then I say stay gluten-free. With an official diagnosis, you may get more support from the hubby (maybe) but unless your kids are extremely empathetic, I doubt you'd get any support there...

Besides, 30% of celiacs test negative anyways, never mind the fact that there are at least 5 times as many gluten intolerant people as celiacs, and they test negative too.

I will add though, that celiac is genetic so if you have it, there is a chance (1/27 I think) that each of your kids could have it. Get them blood tests if you can, especially if your house is going gluten-free since, as you know, being gluten-free skews the results.

Best wishes and congrats on feeling better!

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After I was diagnosed I rid the house of all baking/cooking items that had gluten in it or was cross contaminated. I do not allow baking with regular flour at all. I decomtaminated the kitchen and dedicated a small area on the counter that my husband and kids could use for gluten items. The rest of the kitchen is strictly gluten free. All shared family meals are made gluten free because I refuse to cook separate meals. The kids and hubby ate lunch at work and school. For breakfast they ate what they wanted but had strict rules as to only eat at the table and to wash afterwards. There is no double dipping in anything we share. Hubby didn't think it was cost effective to buy double of everything, so he is very careful to not CC things. I bake almost anything immaginable gluten free and noone in the house complains. If there was something particular I couldn't make gluten free or didn't want to, hubby went to the bakery. Both my kids were old enough that they could follow the rules. I immagine with very small children in the house CC could be more of an issue. It's amazing what little hands touch.

Two years later my youngest son was diagnosed with celiac also. Then the following year my oldest son went gluten free too. So now there are three of us in the house gluten free. My husband still has his bread, cereal and a few snacks, but that is it.

If you want an official diagnosis then you would need to go back on gluten for 2-3 months to get the best chance for a positive test. Some people after they go gluten free find it hard to do a gluten challenge and can't weather the reactions. Do what feels right.

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I am so new to all of this, today is day 40 going gluten free, with a few unwanted glutenations along the way! This is a whole new world, a whole new life! In short I have been sick for along while but 5 years with symptoms I beleive related to Celiac Disease. I have had many tests done over these years,by many doctors trying to figure out what is "wrong" with me from cat scans, blood work, x-rays, MS testings,spinal taps, hormone testing, gall bladder testing....not one doctor ever mentioned to me that maybe I had an allergy or an intollernce to foods. In short about two months ago I sat down to rock my 1 year old, turned on the TV and there was Dr.Oz with guest Elizabeth from The View, talking about Celiac Disease and the symptoms, as I sat and watched the symptoms being explained I could check off every single one of them and then some...(if anyone is interested I could list them for you)right then a light bulb went off in my head...this was a sign nothing to loose, maybe something to gain, but absoutlly nothing to loose!! So that was it for me the rest of the day I watched what I ate, and then the next day and every day since then...after 72 hours the gall bladder pain and stomach pain started to subside, I had a burst of energy, I was running with my 3 year old on a "walk", I could hug my husband without pulling away because it was to uncomfortable...I can go on and on...but the best thing is I am feeling better then what I had in a very long time, with no help from the doctors! (Still thinking of billing them the $7K in medical bills accumulated/ but they are good samaritians after all, right!) I am by no means healed, but I feel as if I am healing!

So about two weeks ago I went to see an allergist so excited to get this show on the road...I want to know everything so I can fix it, and move on. In short the allergist came up empty handed..I had NO blood work done for the Celiac Disease because they informed me that I would have to be digesting it for the tests to come out correctlly. So my friends this is a PROBLEM for me...because NO way would I take a million dollers to feel the way I had felt before all of this.

Does having the underlined diagnosis sought out worth my pain and suffering?

What if it showed negative? But what if it shows positive?

I have a husband that is a gluten 'LOVER', 5 kids that go nuts for cakes/brownies/breads...you name it they digest it!

The two times that I am well aware of that I was contaminated was not pleasent for me or for them but I am DROWNING in possiable contaminations here in this household...Do I move out...?LOL

I just want support/someone who gets all of this, gets me. My family just does not understand as I am making there turkey sandwhiches with plastic baggies over my hands and itching like crazy, my throat swollen and snot draining, foggy head as Im pouring there gravy on there mashed potatoes...later washing all the dishes...

Is having the diagnois going to be worth it, is my main question, I guess,? Does that help with support in the long run through all of this? Do your families/households just take it out completelly? How do I cook for all of them while I feel like S*&%, with a smile on my face knowing what I am going to feel like by the end of there dinner!

AHH, THANK YOU FOR LISTENING TO MY BABBLES!

Cathleen

Hi! My name is Angie! I would be interested in learning more about the symptoms you've experienced. My 'obvious' symptoms just started back in May 2012, but now looking back, I am thinking I have had less obvious symptoms for years!!! My recent issues in May were bladder-related, but thought it was UTI issues or something. I have now been through countless rounds of bloodwork, CT scans with barium and IV die-contrast, GYN ultrasound, CA-125 bloodwork to test for markers with uterine cancer, visited urologist, OB-GYN, PCP, and then referred to pelvic physical therapy due to immense abdominal tension. I still have pain but cannot determine if mine is bowel, vaginal, or urinary pain. Here is the kicker - I always thought Celiac/gluten sensitivity would bring bouts of diarrhea because the body would try to rid of the poison. I am a very constipated person. Found out that constipation is a BIG symptom for many. Well, my brother is HIGHLY allergic to gluten - never thought I was at-risk because our symptoms are not the same. So......I sought assistance from an integrative doctor. He is doing bloodwork (7 vials, stool sampling and saliva sampling). He is checking for several things (to rule out other issues, too). Like you, I am new to this. I gave up gluten the day after my bloodwork and will get the results tomorrow. I have felt some improvement but not TONS. I know it takes time and CC is always a possibility. I appreciate any info you can offer (or anyone else on this thread!) THANK YOU!!!!!!! :)

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Welcome Angie!

I have always had C rather than D -- I believe it is one of the reasons I went undiagnosed for so many years -- it is unfortunate that most primary docs still believe that those with Celiac must be underweight with D -- so many of us retain weight with C.

Improvement can take time - it took many years to cause the damage - makes sense it could take time to heal. Even small improvements are worth noting - watch for them. Nail/Hair changes; gums may improve, etc, etc, etc.

Good Luck to you :)

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Welcome Angie!

I have always had C rather than D -- I believe it is one of the reasons I went undiagnosed for so many years -- it is unfortunate that most primary docs still believe that those with Celiac must be underweight with D -- so many of us retain weight with C.

Improvement can take time - it took many years to cause the damage - makes sense it could take time to heal. Even small improvements are worth noting - watch for them. Nail/Hair changes; gums may improve, etc, etc, etc.

Good Luck to you :)

Thank you, Lisa! Funny you say small changes. I have had less night sweats (not totally gone yet), my finger nails are already stronger (did not think I could see a change in my nails in 2 weeks!), and minor improvement in overall 'feel' of hair. Ends are still dry, probably due to lack of vitamins over the years. I will definitely keep watching the small stuff because in the end, those small things add up to lots of relief! THANK YOU for your insight!! :)

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Welcome!

Very glad to hear you are feeling better on a gluten-free diet. Am am sad to hear your family is not supportive. I have to ask -- have you told them how much better you feel off gluten/conversely how bad you feel when just handling gluten for them? I know I tend to roll along saying everything is fine, until I can no longer roll.

If you are doing all the cooking - you should be able to replace a lot if not all the menu items your family is used to. Our gravy tastes just the same as it did with gluten-free flour and betty crocker brownies with chocolate chips added are a favorite with my teens. We have replaced everything we ate before going gluten-free and many items taste better -- it just takes time.

Hang in there - as for a firm diagnosis talk to your husband - would he support you more with a diagnosis? Make sure you let him know that you will need to ingest a substantial amount of gluten for a few months (now that you have been gluten free this may hit you harder than ever before).

I'd vote for just staying gluten-free without diagnosis, yet completely understand if you wish to get a firm diagnosis.

Thank you so much for your reply!

I think Im so new to this that rolling along with everyone and there needs/wants,putting mine a side (knowing this is helping me to feel better)but allowing them there lifestyles, its disasterous...to say the least!

We went camping this weekend with the husbands side, I'm pretty sure I've come back glutenated, my stomach burned lastnight, I've turned into a zombie, very irritable this am...hands big and small were in everything, every dip, fruit bowl, I can never just have my own drink someone is always taking my cup/water from me...

This is exhausting!!!

My husband wants me to feel better, but he likes his food & his beer, I see him caught in the middle...

My oldest son when he was 1 was diagnosed with PDD (Autism Spectrum) I have seen that this could be linked to that, I will be setting up some blood testing for him..

In the mean time I had my 10 year old daughter to the allergist last week, I set that up when I found out this is helping me, I thought since I can't be tested that I would get them all tested, so we are waiting on her blood work, they did however tell me she was allergic to grass, ragweed, dust, & mold, treating her for asthma issues, and she has had excema since an infant...also seen that celiac can be in relation to asthma and excema...excited to see the results of her blood work!

I do not wish ill on my children but if one of them would just test positive I could maybe feel like I wasn't crazy feel like I had substantial ground to back my findings up, to help with the explanations to family and friends around...

A major symptom of mine was constipation, I could easily go 8 days without having one single bowel movement, I have been pretty dang regular since the elimination, and I believe that when I have been contaminated that it is actually causing things to run threw me...

My mother's side has Chrone's and Colitis...

My father's side is unknown and he is deceased..

This is great insperation for me, and I thank you!

I think its time for a garbage bag and some bleach...kitchen makeover!

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I'm a week in-- can't wait for 40 days! Congrats on the new you.

Thank you! I am excited to continue learning and feeling better!

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If you are comfortable with staying gluten-free with a diagnosis, then I say stay gluten-free. With an official diagnosis, you may get more support from the hubby (maybe) but unless your kids are extremely empathetic, I doubt you'd get any support there...

Besides, 30% of celiacs test negative anyways, never mind the fact that there are at least 5 times as many gluten intolerant people as celiacs, and they test negative too.

I will add though, that celiac is genetic so if you have it, there is a chance (1/27 I think) that each of your kids could have it. Get them blood tests if you can, especially if your house is going gluten-free since, as you know, being gluten-free skews the results.

Best wishes and congrats on feeling better!

I love your knowledge, and your support, thank you!

I agree stay gluten free! I'm also thinking I should try to cut out dairy and see how I feel...after all when I was an infant I was intolerable, hospitalized 4 times directlly in relation to reflex, milk & soy intolerences...why would't I try this too!

I need to set up a blood test for my 14 year old but last week I had my 10 year old daughter tested and am hoping for those results this week.

If her results do not show me anything I still want to try her on the diet if she will cooperate.

Thank you, Thank you!!

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After I was diagnosed I rid the house of all baking/cooking items that had gluten in it or was cross contaminated. I do not allow baking with regular flour at all. I decomtaminated the kitchen and dedicated a small area on the counter that my husband and kids could use for gluten items. The rest of the kitchen is strictly gluten free. All shared family meals are made gluten free because I refuse to cook separate meals. The kids and hubby ate lunch at work and school. For breakfast they ate what they wanted but had strict rules as to only eat at the table and to wash afterwards. There is no double dipping in anything we share. Hubby didn't think it was cost effective to buy double of everything, so he is very careful to not CC things. I bake almost anything immaginable gluten free and noone in the house complains. If there was something particular I couldn't make gluten free or didn't want to, hubby went to the bakery. Both my kids were old enough that they could follow the rules. I immagine with very small children in the house CC could be more of an issue. It's amazing what little hands touch.

Two years later my youngest son was diagnosed with celiac also. Then the following year my oldest son went gluten free too. So now there are three of us in the house gluten free. My husband still has his bread, cereal and a few snacks, but that is it.

If you want an official diagnosis then you would need to go back on gluten for 2-3 months to get the best chance for a positive test. Some people after they go gluten free find it hard to do a gluten challenge and can't weather the reactions. Do what feels right.

Thank you so much for your knowledge and support, it is so good to have someone to talk to and who knows what you are going through! Being a mom of 5 kids is tough, being a mom of 5 kids who needs to be so dietary restrictive is even harder. I suppose I will learn and hopefully it will get easier. My oldest son is 14, diagnosed with PDD (autism spectrum) when he was just 1, I will be having him tested soon, 13 year old step daughter with no concerns on her diet at this time, my 10 year old daughter whom I had blood work done on last week and am anxiouslly waiting the results, I also have a 3 year old son and a 1 1/2year old daughter - these two I may wait for tests on - they did have issues with milk when they were infants...actually all of my children did...

No sympathy will come from them, this is true! I need to be the one to change how this kitchen works, let them make there choices outside of the household for now (tests pending) ... I do like the idea of a "little area" for there items.

Do you make your own bread, household bread?

Can you suggest your favorite go to site for meal ideas?

Thank you again for your support, it is much needed, and very much appreciated!

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Hi! My name is Angie! I would be interested in learning more about the symptoms you've experienced. My 'obvious' symptoms just started back in May 2012, but now looking back, I am thinking I have had less obvious symptoms for years!!! My recent issues in May were bladder-related, but thought it was UTI issues or something. I have now been through countless rounds of bloodwork, CT scans with barium and IV die-contrast, GYN ultrasound, CA-125 bloodwork to test for markers with uterine cancer, visited urologist, OB-GYN, PCP, and then referred to pelvic physical therapy due to immense abdominal tension. I still have pain but cannot determine if mine is bowel, vaginal, or urinary pain. Here is the kicker - I always thought Celiac/gluten sensitivity would bring bouts of diarrhea because the body would try to rid of the poison. I am a very constipated person. Found out that constipation is a BIG symptom for many. Well, my brother is HIGHLY allergic to gluten - never thought I was at-risk because our symptoms are not the same. So......I sought assistance from an integrative doctor. He is doing bloodwork (7 vials, stool sampling and saliva sampling). He is checking for several things (to rule out other issues, too). Like you, I am new to this. I gave up gluten the day after my bloodwork and will get the results tomorrow. I have felt some improvement but not TONS. I know it takes time and CC is always a possibility. I appreciate any info you can offer (or anyone else on this thread!) THANK YOU!!!!!!! :)

Angela, God Bless You!! Thank you for your reply, I am so sorry you are sick and going through everything that you are going through...I hope you find your answers and your releif! How are you feeling today? Have you received your tests results back yet?

I'm unsure how much of things for me went unnoticed like you in the past, but it was about 5 -5 1/2 years ago that I started feeling sick...I went threw a really stressful break-up with a man who I had pictured marrying who lived with my two oldest kids and I (6 years ago), life moved on, I bought me a dog, quit a very stressful job, started dating, met my husband, got engaged, (seen a few docs not feeling well)found out I was pregnant, got married, had my son... got very, very ill...lost a ton of weight, foggy head, migraine headaches (had never had these), undescriable anxiety, hair loss,(my dog got hit by a car and died) I had confussion, muscle weakness, I had flu like symptoms but wasn't getting the flu....had tests run to check for MS, I had that contrast test done where they look at the functions of things, they said I needed to have my gall bladder removed (actually this test was done days prior to finding out I was pregnant with my son), I kept my gall bladder, I had a mri done on my head to see why I was having all the migraines, they told me there were a few spots that look like they could be associated with hormone problems & causing the headaches, but my regular doctor said that maybe it was MS, so I had tests done for MS (spinal tap), they said those were found normal, my stomach continued to look like I was pregnant (bloating), constipation, vitamin D & Iron I usually test low on...

After all of this I prayed that I would get pregnant again because I felt better during the pregnancy then I had in a very very long time...so thats what I sought out, and that is why my daughter Averi is here, I was sick and I needed some refief, the doctors were not finding anything, family & friends kept telling me I needed to eat (I was eating) ... I was literally a crazy person with confusion and anxiety...doctors suggested fibromyalgia a couple of times, kept hearing the words depression...Now do not get me wrong after going through all of this stuff and some financial difficulties, selling of a house, living in a place I wanted nothing to do with, switching schools, jobs, loss of a dog, new husband, a baby....I mean ya I was probally a little depressed but if I know one thing just one...I know my body and I know my body was not right!

So I got pregnant, many many things subsided and I started to feel better...I dreaded feeling sick again...I had Averi and she will be two now in October, I started feeling real sick again about 4-6 weeks after she was born, it never got as bad as after my son but there were even diffrent things...so I went to see a hormone specialist, now they said that I had some vitamin defficincies, and that my progesterome was a .5 no where near the normal range so they gave me hormones...basically until the day that I sat down and rocked her I have been awaiting answers...I have lived with all of these things for so long with no answers, that day I started this was a day of hope, and these past 40 some days have been my answers, I am healing!

I started doing jumping jacks at night just to test out how many I could do before it hurt, or taking a stroll with my son to find us racing because I could and I wasn't cringing and waiting for the pain to become unbearable...I would and still will eat something and my whole body will tighten up waiting for an ill response, pain...I am still getting used to the idea that it may just be better, hugging my husband kids, letting them sit on my stomach on the floor, or doing crunches...I would avoid all of these before because my stomach used to always feel like it could just pop... after I had Averi I called the doctor one day and told him I thought my spleen was swollen because it hurt so bad, they ran me through a cat scan, and said maybe I should try the fibromyalgia medicine again....no doctor not one has ever suggested to me that it could be food related...

Angela, I hope you find some answers! I know that I am so new to this, and I am learning so much about myself too but please do not hesitate to ask questions or come chat with me! Thank you for your support!

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Thank you, Lisa! Funny you say small changes. I have had less night sweats (not totally gone yet), my finger nails are already stronger (did not think I could see a change in my nails in 2 weeks!), and minor improvement in overall 'feel' of hair. Ends are still dry, probably due to lack of vitamins over the years. I will definitely keep watching the small stuff because in the end, those small things add up to lots of relief! THANK YOU for your insight!! :)

Love Love Love the Small Things!!! Celebrate the small things!

Cathleen

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    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
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