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Denise1234

New To This..enterolab Or Blood Test/ Endoscopy?

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Hey! I'm Denise, i'm 19 years old and totally frustrated. I have had stomach issues my entire life and after being tested for ulcers and lactose intolerance 29832 times i gave up and figured this is just how i am, its normal. So i was diagnosed with ADD in feb of this year and as i was looking at forums on an ADD site I noticed an article about the correlation between ADD and celiac disease. i had no idea what celiac was so i looked at it and all the sudden everythign started making perfect sense!

my constipation

my 9 months pregnant looking belly after eating

bloating, gas

cramping and pain

daily charlie horses

dry patchy skin

slow, foggy brain

cracky joints, non injury related miniscus tear?!?!

inability to burp?? grumbly sounds in my throat and tummy

constant fatigue

uncontrollable cravings for food, inability to lose weight even though i always ate SO HEALTHY until resorting to anorexia and losing 30 lbs.... :(

and a million more!

I decided to go off of gluten for a couple weeks and i felt INCREDIBLE! i lost 5 lbs and 3 inches off my waist, i wasnt carrying so much water weight! i was so energized, I could wake up in the morning with otu feeling groggy, no charlie horses, clear thinking, although my ADD meds seemed to start working way too much and it was a bit intense...weird?

but best of all MY STOMACH FELT NORMAL! i wasnt bloated and i didnt have to pass gass every 5 minutes.

SO, i went to the gastroenterologist today and this was his response.

"celiac disease is an ALLERGY to gluten, and you typically wouldnt have constipation. Just because you felt better for a week, that doesnt mean that gluten is the problem. Its probably IBS. Lets take your blood and we'll see. heres 3 prescriptions for your bloating, constipation, and gas."

isnt celiac an intolerance to gluten? not an allergy? and dont a lot of ppl get constipation? and why, may i ask, would i feel so much better by just cutting out gluten, if that wasnt the problem?

And I for one am totally against taking 3 PRESCRIPTIONS just to mask the problem. when i told him i wouldnt take them until i figured out the problem, so i could stop it from happening in the first place, rather than masking it, he cut me off and basically laughed at me. am i being totally ridiculous? I really dont want to use hiim as my doctore and so after this long rant here is my question:

Enterolab tests or bloodwork/endoscopy? or both? I'm totally lost. my parents wont help me pay for the enterolab tests and i'm not sure about insurance coverage, but i will probably end up paying myself because it sounds more legit. any advice?

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Hi there,

I am also 19 and going through pretty much the same thing as you :)

If you can stand to eat the gluten, you should definitely go for the blood tests and endoscopy. And don't ask for it, demand it. Because your doc obviously doesn't know much about it. Ask for these blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's good to go in armed with info. I went and asked for the 'Celiac panel', and they only tested my tTG.

The reason, and the ONLY reason I opted for Enterolab, is because I didn't know what I knew then. I didn't know I needed all these tests. They told me it was negative, and I went on and did the gluten free diet as a trial. He refused to scope me with a negative blood test.

I just found out this week that they only testd my tTG which I KNOW is not conclusive on its own. Now I am not able to do the blood/biopsy because I have been gluten free for a month and won't go back.

Either way, its entirely up to you. IMHO go for the blood/biopsy first. It'll be so worth it and will give you peace of mind, unlike me, now I'll never know if I have Celiac or not, because remember Enterolab only tests for gluten sensitivity and NOT Celiac. If you need/want an official diagnosis, get the blood/biopsy.

I hope you feel better soon! Take care

Kim


~Kim~ Gluten-Free since July 2008

9 inguinal hernia surgeries in 3 years (2004-2007)

Symptoms Pre-Dx: constant abdominal cramps, acid reflux, nausea, vitamin B12 deficiency, chronic constipation, fatigue, hyperhidrosis, migraines

July 7/08 - tTG 1 (+>4) - Diagnosed with IBS, given Rx, sent home to "relax"

Gastro refused biopsy as I had "already been though enough"

Enterolab Results (Aug 2008) - Fecal Antigliadin IgA 11 (Normal Range <10 Units)

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Sept/09 - New GP gave Celiac Dx based on response to diet and family history

National Celiac Disease Conference 2010 Volunteer

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Once again...I will not go into my feelings about most doctors. :o

Your positive response to the diet is really ALL you need. But if you can afford it, do the Enterolab with Genetic testing. Go ahead and do the casein and soy while at it as most celiacs/gluten intolerant folks have issues with those as well.

You can also get full celiac panel through online labs like Directlabs.com. It is pricey. But you do not need a doctor's rx for them.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Your doctor is an idiot.

Celiac is an autoimmune reaction, not an allergy. Constipation is common, as are all your other symptoms. And why in the name of the Dear Lord Above he said, "just because you felt better after eliminating the source of the problem doesn't mean that's the problem" (well, basically, that IS what he said) is totally beyond me. No, wait, it's not beyond me. It means he wants to make more money by charging you for tests, surgery, and repeat visits, plus the kickbacks he gets from the pharm industry for prescribing meds.

I would not only fire him, I would write a letter to the health/science editor of your local paper--and by all means, name names. Heck, alert your insurance carrier--they would have paid for the expensive bloodwork and biopsy.

You are obviously intelligent. Too bad we can't say the same for your doctor (hopefully soon-to-be ex-doctor)

Welcome aboard. Pretty soon, we will be asking YOU for advice! You seem to be already on top of things!

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Hi Denise

My doctor said the same as your doctor. He did the blood work and said I did not have celiac. He told me to go on the gluten diet indefinately.

Here is where my story gets interesting. Two weeks after starting the gluten diet, I had my liver enzymes, trycylerieds(sp), cholesterol tested. They were all within the normal range. No one was more surprised than I. I was sent to GASTRO, because my liver enzymes were very high, and had not been within normal range for over 5 years.

My Gastro, said she was sending me for a Celiac biopsy, because I was showing signs of Celiac, and I had already been diagnosed with Sjogren's. I said to her how can that be because my celiac blood work came back negative. She said that was not uncommon. I said I thought I had to have diarrhea. She said that constipation is also a sign of celiac. So she ordered me back on gluten. My biopsy is for September 4th.

Within a day I had major problems. Within two weeks I was taken to hospital, my liver enzymes where highest they have ever been. I also was diagnosed with a kidney/bladder infection. I didn't have typical bladder infection.

Symptoms since going back on Gluten

- Insomnia and sleep apnea mild to moderate even after taking 1 mg Ativan.

- Pressure on CPAP up to 14 from 13 little less coughing

- Ongoing itching

- On the 22nd of July, woke severe pain @ 11:05 pm, tried to fall back to sleep but pain had gotten much worse called ambulance 1:45

- at hospital found my liver enzymes in severe level - told to take 4 mg of Ativan to try get sleep

- Also found out had bladder infection - not typical bladder infection - no burning - just hesitation - not put on anything couldn

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Symptoms since going back on Gluten

- [b]Insomnia and sleep apnea[ mild to moderate even after taking 1 mg Ativan.

- Pressure on CPAP up to 14 from 13 little less coughing

- Ongoing itching

- On the 22nd of July, woke severe pain @ 11:05 pm, tried to fall back to sleep but pain had gotten much worse called ambulance 1:45

- at hospital found my liver enzymes in severe level - told to take 4 mg of Ativan to try get sleep

- Also found out had bladder infection - not typical bladder infection - no burning - just hesitation - not put on anything couldn

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I would get the one of these in this order. But do what you can afford:

Gluten Sensitivity Stool and Gene Panel Complete ($369)

Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test (Best Test Panel for Gluten Sensitivity). The combination of tests when ordered in this panel saves you greatly over ordering the tests individually. Top

Gluten Sensitivity Stool Panel Complete ($249)

Combination of stool test for gluten sensitivity, stool test for tissue transglutaminase, and test for intestinal malabsorption. These tests complement one another and are best ordered together. Save money by ordering them together. Top

Stool Test for Gluten Sensitivity ($99)

Test What It Tests For Meaning of Positive Result

Screening test for gluten sensitivity (Fecal antigliadin IgA antibody*) Reaction of the immune system to gluten in the diet Immune system considers gluten a foreign protein causing a reaction that may damage the intestine and other tissues of the body Top


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Gerri,I hope you are no longer on gluten. You have all the answers you need, and you are obviously poisoning yourself. If you continue to eat gluten with those results, you may not live long enough to make it to the biopsy.

If your doctor is hesitant to cancel the biopsy and wants you to keep eating gluten, ask him to put it all in writing so that (and tell him this) your husband has a great malpractice case when you end up in a coffin because of his insistence that you damage yourself.

It's like telling a peanut-allergic person to eat peanuts for a full month so that the doctor can wait for the anaphylactic shock BEFORE diagnosing a peanut allergy.

Other than that, I'd say that at least, your doctor knows that celiac is a strong possibility. But he should know enough to remember "but first do no harm."

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:lol: We must have the same doctor. When I went to mine to get tested for Celiac he wanted to give me an allergy persciption. One of my son's main symptoms was C. He never had D.

Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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To Emergency 12 am to 4 am this morning. Latest problem (Benign Paroxysmal Positional Vertigo

Has anyone else had this problem. Is there need to be concerned. Has the exercises they prescribed the best means of treatment. Do they always work.

I go to lie down on my left side, this Benign Paroxysmal Positional Vertigo, is so severe. After about a minute it does go away, until I sit up.

From what I read it has something to with my left inner ear and some crystals, that have to moved around. I turned my head 45% after lieing down talk about swimming. This type of swimming is not fun.

Anyway this was brought on I believe because I am poisoning myself on gluten, because this is what I have to do to prepare myself for the celiac biopsy. No doctor at least here in Canada, will say stop to the poisoning of myself with gluten and just label me with celiac. So on I go until September 4th, when I have the Celiac biopsy.

So in the mean time the exercises I hope will help rid me of this vertigo.

Hugs

Gerri

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I have that kind about once a year. It is awful. It does go away with me after about a week of the exercises.

I do hope that if your biopsy comes back NEG that you will stop poisoning yourself. And I hope you make it. I am praying for you.

I couldnt do what you are doing. :(

Are you on a waiting list to get bumped up in case of a cancellation???????


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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I know two people with the BPPV--and they both have major problems with gluten as well.

You do NOT need a doctor's permission to go off gluten. You do NOT need a doctor's permission to cancel the biopsy. You do NOT need a "celiac" label to take control of your diet and your quality of life. You do NOT need a doctor's permission to stop poisoning yourself.

If you continue to poison yourself, you may do irreparable harm to your neurological system. Is it worth it to you, especially considering the chance that your biopsy might be negative anyway? Keep in mind that some celiacs, such as some who have DH (an automatic diagnosis of celiac, without need of biopsy), do NOT always have measurable villi damage. It does seem that those with neuro symptoms might fall in that category as well.

It's your body, and your life. Not your doctor's or any doctor's in Canada. You don't need anyone's official label or permission to do what it takes to prevent further damage.

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I have that kind about once a year. It is awful. It does go away with me after about a week of the exercises.

I had the same vertigo symptoms which brought me to my doctor on the diagnosis of my hypothryroidism...which is when I was not faithfully eating a gluten-free diet...does this happen to you when you get glutened by any chance?

Denise, I have many of the same symptoms that you get, all of which have gotten better after my 'self diagnosis' (didn't have insurance at the time, and even if I did...well, we all know how difficult it is to get a confirmed diagnosis) So I wish you well, and if those of you who feel that a gluten free diet helps you feel better and your symptoms go away while on one, feeling better has been proof enough for me!

But, not for the insurance companies, because I have insurance now. I desire confirmation via DNA testing (which, fortunately, my insurance will cover) because I refuse to eat what I know is 'poison' to me to do other tests and get a positive result. I'm just having difficulty figuring out which company to go with and what the procedure is, but I'll get there.

Sometimes, things take time...but I believe eventually, we'll get the results we need!


Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

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Gerri,I hope you are no longer on gluten. You have all the answers you need, and you are obviously poisoning yourself. If you continue to eat gluten with those results, you may not live long enough to make it to the biopsy.

If your doctor is hesitant to cancel the biopsy and wants you to keep eating gluten, ask him to put it all in writing so that (and tell him this) your husband has a great malpractice case when you end up in a coffin because of his insistence that you damage yourself.

It's like telling a peanut-allergic person to eat peanuts for a full month so that the doctor can wait for the anaphylactic shock BEFORE diagnosing a peanut allergy.

Other than that, I'd say that at least, your doctor knows that celiac is a strong possibility. But he should know enough to remember "but first do no harm."

Although I agree that doing a gluten challenge may not be in the best interest of the patient, unless they NEED to see the damage to adhere to a gluten-free lifestyle, your comments are so overblown it's ridiculous. I was at the point where I was about a week away from a feeding tube when I was diagnosed and, lucky for me, my blood work was so high, the doctor diagnosed me on that, along with symptoms. However, I was not about to go casket shopping either. I healed just fine on the gluten-free diet so am living proof that you don't croak from eating gluten for a month. Some people NEED to have a formal diagnosis and if they are comfortable with doing a gluten challenge, it shouldn't be a problem. Some will get halfway thru a challenge and quit because they feel so bad and that's fine too. But comparing it to a peanut allergy is ridiculous because a peanut allergy in my mind is worse than Celiac....only one peanut can make a person stop breathing and die. This does not happen with celiac disease. Not to downplay the risks of celiac disease but it usually takes the form of chronic disease that doesn't kill you but is a pain in the ass sometimes to live with. I know as I have 3 other autoimmune problems besides the celiac disease and I would take this in a heartbeat over many other medical problems. Don't throw the cancer warning out there either because the vast majority of people would have to consume gluten over a lifetime to cause enough inflammation to develop cancer. Please keep things in perspective.

Now where is my flame suit....... :o

Gerri.....don't sweat the vertigo. I had SEVERE vertigo when I was eating gluten to the point I was falling over at work. It was in your face, room flippin' dizziness where I had to sit down and hold onto something to stay upright. Within 3 months of going gluten-free, vertigo was gone and it has not come back. I did not go to any doctor about it because at that point all they would do is either prescribe something or look at me blankly and say they had no clue what the problem was.

It's one of the neurological effects of gluten poisoning. If you feel you can be a compliant Celiac for life, then bag the testing and do a dietary trial. If you want the testing at least done to see what it turns up, then do the challenge as long as you can stand and test away but it sounds like you are a new member of the club! Good luck to you.

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I don't think my comments are overblown because

#1 I lost a friend to B-Cell intestinal lymphoma (the kind for which celiacs are at such high risk)18 months ago. His doctor screwed up, too, and tested him for wheat allergy, rather than celiac, and told him that he was just fine. He was 31 when diagnosed with the lymphoma--which they said had been growing for at least 8-10 years.

and

#2 Gerri's symptoms were serious enough to bring her to the ER. If she were to have a BPPV attack while driving, that could cause her to crash her car (happened to a friend of mine).

Gemini, I'm very glad that you DID heal from your severe damage--but haven't you seen any of the posts from the old-timers on this board that say that they do have some damage that never healed? Those people resent every extra crumb of gluten they ate out of not knowing any better. You may living proof that it is possible to heal from severe damage--but your experience is NOT a guarantee that everyone will heal the way you did, or even that most will. And if you had not fully recovered (and some don't), would you still say that my comments are ridiculously overblown?

Look up ravenwoodglass, debmidge's husband (listed on her sig), Ursa Major, Canadian Karen, floridian, all of whom have apparently permanent damage from gluten.

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Fiddle Faddle & Gemini,

Thank you for your very much appreciated comments.

I very much want to stop gluten now. Yes I know I have Celiac, but I can't stop until I have the biopsy.

For years I have severe on going GERDs (which is not being treated with medication, because of my severe allergies), that has done much damage to my esphagus. My gastro is going to check out my throat, and esphagus on the way through. I am equally scared or more scared of having cancer of the throat.

My stomach problems are many. Celiac is serious, but I can't stop and not have the biopsy. I was sorta hoping that this last trip in the hospital would force my doctors into doing the biopsy earlier. I have a call into my GASTRO.

Fiddle Faddle, yes I am scared, I am so scared, without medication of any sort, my life will be shorter than most.

Gemini, Fiddle Faddle was not the first one to tell me of the dangers, and I am afriad she won't be the last.

I appreciate the care and love given freely here. I wish I could convince my doctors to do tha biopsy earlier. Right now I don't care if the biopsy comes back positive for Celiac. just back on Gluten and my many symtoms has proven that enough for me. I want that camera down my throat, and my GASTRO is willing to check out my concerns out, on the way through. Logical or illogical, I don't know. All I know at the moment, is that my family doctor will not get me the appropriate help, and I am so tired of asking. Getting any new doctor is impossible here in Ontario, Canada. So when the GASTRO said she would do the biopsy for Celiac, and check everything out I knew I finally had someone who cared on my side.

Hugs

Gerri

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Gemini, I'm very glad that you DID heal from your severe damage--but haven't you seen any of the posts from the old-timers on this board that say that they do have some damage that never healed? Those people resent every extra crumb of gluten they ate out of not knowing any better. You may living proof that it is possible to heal from severe damage--but your experience is NOT a guarantee that everyone will heal the way you did, or even that most will. And if you had not fully recovered (and some don't), would you still say that my comments are ridiculously overblown?

Look up ravenwoodglass, debmidge's husband (listed on her sig), Ursa Major, Canadian Karen, floridian, all of whom have apparently permanent damage from gluten.

Gerri's post almost brings me to tears. That a doctor would continue a challenge when the person is being so severely impacted is in my opinion criminal. There can come a point where the damage to the nervous system does become permanent. In others repair can come at a very slow pace, meaning years. The impact on the liver is also very troubling to me. (my sig shows why) While the liver does have some regenerative powers it can be damaged beyond repair. Other organs can also be permanently damaged as a result. With the impact that Gerri has mentioned I do not think the warnings are overblown at all. If Gerri was just saying that her issues were severe D, C or skin issues that would be one thing. But Gerri is undergoing a full body and brain assalt. IMHO the challenge should have been stopped by the DOCTOR a long time ago.

Edit:

Gerri, We were posting I think at the same time. I do not disagree with the endo and your reasons for wanting one are valid. How far away is the endo? Have you talked to the doctor on a regular basis about your symptoms? Perhaps he would agree to let you go back on the diet, something you clearly need, but still go ahead with the endo to check for the other issues you have. Although you might not have those other issues if the endo is still some distance away.

I know I am not the only one here that is concerned about you. I do hope you can begin healing soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

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 in time with proper diagnosis of Celiac November 2002

 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)

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so i've been off gluten since tuesday, i decided to do the enterolab testing i will order it when i get paid... the thing is i dont feel as great as i did when i gave it up last time. i've been EXTREMELY dehydrated! and craving sugar and starches like crazy, and my stomach still growls and bloats up a little after everything i eat, including plain old egg whites! whats the deal!!? last time i felt fantastic after 4 days....

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so i've been off gluten since tuesday, i decided to do the enterolab testing i will order it when i get paid... the thing is i dont feel as great as i did when i gave it up last time. i've been EXTREMELY dehydrated! and craving sugar and starches like crazy, and my stomach still growls and bloats up a little after everything i eat, including plain old egg whites! whats the deal!!? last time i felt fantastic after 4 days....

Denise, I am having a similar experience. The first time I gave up gluten for four days, I felt awesome. Then I went back on it for the blood tests I THOUGHT my dr was going to do (he only did one, not the full panel!). I went off gluten right after that, and while I felt a little better, not as great as I did at first. I honestly think that gluten is addictive--in some people it reacts to the body like an opoid--and we go through withdrawal. Also, your body is still normalizing and healing after years of glutening. Maybe egg whites are too much to digest--proteins can be hard to digest.

Some foods that my body really likes right now: Rice, corn tortillas, potatoes, soy yogurt (Silk Live), Larabars, plain baked chicken on salads, cooked vegetables, fruit. My body is not liking a lot of sugar. If i eat a dessert, even if it's gluten free, i start craving more and more and then end up feeling like i've had a ton of caffeine. Oh, coffee is out too, it's exacerbating my sinus inflammation in a bad way. I've been craving the sugar and starches as well--I think part of it is biological (missing all those straight glutens from bread and pasta, which act on the body like sugar), and part of it is emotional. We're stressed because we're giving up an old way of eating. Just be patient, with your body and with yourself.


Negative EMA test 8/08

Gluten free 8/08

Positive response to dietary change

Dairy free 3/09

Citrus free 5/09

Allergies: bananas, apples, green beans, mold.

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samcarter-

thank you so much your post was very helpful!!! i'll stick with the soft foods like yogurt and bananas and rice, my body is responding well to those things right now. i just didnt know why! thanks again!

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Hi ravenwoodglass

Sorry I didn't get back to you sooner. I was very upset yesterday. I didn't want to talk to anyone.

I called the GASTRO, to see if I could get into see her like (two days ago). Well all I got was NO, NO, NO. I was told that my GASTRO was all booked up. After this week she is on call for three other GASTRO's until the day of my appointment, which is September 4th. I told the receptionist I have been to the hospital twice and Urgent Care once, it didn't matter. She said leave me your phone number, I figured what's the use, if the GASTRO, was that busy, there was no way she would be able to fit me in. I figured I have a better chance of seeing her, if I have to go to emergency again, and see her at the hospital.

My Vertigo has quieted. I went on the internet and found some exercises to do to work out the crystals of my left inner ear. It wasn't fun doing them, but they actually worked. Over the years I've had lots of problems with my ears.

That night I had the Vertigo attach, it scared me because I wonder what next. I had called Healthy Ontario, where a nurse goes over your symptoms and decides whether you should go up to ER. The nurse said that she thought it best I go up right away Monday night (arrived there before 12 am), and that she would fax the papers to the hospital (I don't believe they ever got them). Because of severe auditory Processing Disorder, I am not able to explain well what's going on. I was told they were calling in one of my doctors. I lay there in pain, as I was on my back (severe back problems), I couldn't move. As I wasn't lieing down on my left side the Vertigo was actually not too bad, I just didn't move my head to the left or sit up moving my head to the left. A doctor finally seen me, and said sorry there is nothing he could do in regard to my vertigo, and sent me on my way at 4am. He said the only medication he could give me I as allergic to.

I am in pain, bloated, and have sores breaking out. I am tired and the brain fog at times is bad. Today I loss my glasses, I had just taken them off. No they weren't on my head. Just laying on the arm of my couch, just forgot I put them there. Brain fog seems to be worse for about hour to 2 hours after eating the gluten, then it calms a bit. I usually try to get things done first thing in the morning, because the day is shot after that.

With the increase in carbs, my sugar is also going crazy, even this doesn't concern my doctor. Also I've had ongoing sinus problems, don't know if this is related to gluten. My asthma is also getting worse. I carry my inhalers with me everywhere.

Only 20 more days till I have the biopsy. After the biopsy I swear I will not touch another gluten in this life time. No way will I go through this a second time. :)

Thank everyone for the concern.

Hugs

Gerri

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Hi ravenwoodglass

Sorry I didn't get back to you sooner. I was very upset yesterday. I didn't want to talk to anyone.

I called the GASTRO, to see if I could get into see her like (two days ago). Well all I got was NO, NO, NO. I was told that my GASTRO was all booked up. After this week she is on call for three other GASTRO's until the day of my appointment, which is September 4th. I told the receptionist I have been to the hospital twice and Urgent Care once, it didn't matter. She said leave me your phone number, I figured what's the use, if the GASTRO, was that busy, there was no way she would be able to fit me in. I figured I have a better chance of seeing her, if I have to go to emergency again, and see her at the hospital.

My Vertigo has quieted. I went on the internet and found some exercises to do to work out the crystals of my left inner ear. It wasn't fun doing them, but they actually worked. Over the years I've had lots of problems with my ears.

That night I had the Vertigo attach, it scared me because I wonder what next. I had called Healthy Ontario, where a nurse goes over your symptoms and decides whether you should go up to ER. The nurse said that she thought it best I go up right away Monday night (arrived there before 12 am), and that she would fax the papers to the hospital (I don't believe they ever got them). Because of severe auditory Processing Disorder, I am not able to explain well what's going on. I was told they were calling in one of my doctors. I lay there in pain, as I was on my back (severe back problems), I couldn't move. As I wasn't lieing down on my left side the Vertigo was actually not too bad, I just didn't move my head to the left or sit up moving my head to the left. A doctor finally seen me, and said sorry there is nothing he could do in regard to my vertigo, and sent me on my way at 4am. He said the only medication he could give me I as allergic to.

I am in pain, bloated, and have sores breaking out. I am tired and the brain fog at times is bad. Today I loss my glasses, I had just taken them off. No they weren't on my head. Just laying on the arm of my couch, just forgot I put them there. Brain fog seems to be worse for about hour to 2 hours after eating the gluten, then it calms a bit. I usually try to get things done first thing in the morning, because the day is shot after that.

With the increase in carbs, my sugar is also going crazy, even this doesn't concern my doctor. Also I've had ongoing sinus problems, don't know if this is related to gluten. My asthma is also getting worse. I carry my inhalers with me everywhere.

Only 20 more days till I have the biopsy. After the biopsy I swear I will not touch another gluten in this life time. No way will I go through this a second time. :)

Thank everyone for the concern.

Hugs

Gerri

Keep us posted on how things are going. I am glad the vertigo has calmed down a bit for you. I hope things are loud and clear on the biopsy and I would not put on a brave face when I saw this doctor again. Fill him in on every little detail, graphically. I don't think a lot of them understand what they are really putting us through. We sure do though. ((((((((((((hugs)))))))))))


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Your doctor is a disgrace. Unfortunately doctors like him are the majority. But anyway don't waste your money on Enterolab. It will just confirm what you already know. At least insurance will cover bloodwork and a biopsy. But you don't even have to do that. You don't need an official diagnosis to get yourself feeling better. Just do what will make you happiest, and always put your health first. I hope you continue to feel better.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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