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Losing Hope...
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136 posts in this topic

How infuriating is it that my PCP called gluten-intolerance a "fad"!! I'm still steaming over that! She's giving me a hard time about getting the biopsy done b/c the blood work was negative. I'm not taking no for an answer.

I don't exercise because I'm so bloody tired AND because every time I exercise my stomach goes into an uproar and I get sick. I'm a busy woman and never just sit at home, but no formal exercise routine. Makes me feel ill. My weight (went from size 8 to 12) bothers me greatly. I don't even feel like I'm in my own body and it's upsetting. I had an appendectomy last year. Since then my gastric problems become worse which is interesting. Can't help but wonder why my appendix got infected and then why the rest of my gastric system got worse. I've always had allergies and IBS (mostly untreated other than diet changes) but all that was a cake-walk compared to what I'm experiencing now.

I am hoping to change doctors after the summer. I am just trying to get these tests done first as she is with the Beth Israel Hospital and they have an excellent GI/Celiac program there.

I'll keep you posted :-)

I will put my 2 cents in too. I had a negative blood test but had a positive biopsy, so I am definately a Celiac. That new "fad" is saving my life. I still have some of the problems you have and they don't know why, I have had a colonoscopy, fun fun, but that came out clean. So they said its IBS. I originally lost a lot of weight before diagnosis, which took 9 months and about another year of trial and practice to start healing. Now all of a sudden I gave put on over 50 lbs. They have no idea why. Thyriod has been tested and tested and tested TSH 3 and 4 as well. So they diagnoised me with chronic fatigue syndrom and since I don't exercise a lot thats why I put on the weight. What BS. I do walk my pup all the time. I run a play with her ever single day. I am not eating enough to keep this weight on and I am so uncomfortable with the weight. Hurting my knees and ankles not to mention I had to get new clothes. I went from a size 6 to 14 in 6 months. I even had my gall bladder out. I am sick of tests. Taking a break. Seem to be sort of stable in weight.

The fatigue is killing me (literally) but I am so tired all the time and now that I am fat I don't want people to seem me. I am very interested in what the doctors say about you. Maybe it can help me. All these symptoms happened after diagnosis except for the gall bladder. Even have restless Legs. Thats my latest, Yipee. I am desperate as well for I am unable to work.

Go for the thyriod test and the, up the but test. Have them allergy test you for other foods a well. Or get a new doctor who does not believe eating gluten-free is a "fad". I would love to give her a piece of my mind.

Vented enough and not really helpfull. Good Luck to you. I will be following this tread.

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The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".

An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)

With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.

Thanks, Tom. I am hoping the endoscopy will be scheduled tomorrow. My PCP told me to go back on gluten but I'm waiting to get the date of endo so I don't suffer too soon. I have been on gluten-free for 3 weeks and still have a lot of pain and bloating. Eating anything hurts right now. But I'm better than I was 3 weeks ago. I don't have a GI doctor yet, but the one who I am scheduled to have colonoscopy is supposed to be excellent so I'm hoping she will do the two together and then refer me to the Celiac program at same hospital where there are GI's who specialize in this.

It's the best I can hope for right now.

I guess for me the big question is - is this celiac or severe gluten-intolerance (ie. not autoimmune)? I don't think I can know that without the biopsy. Am I correct? Thanks!

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I am still learning about intolerance vs allergy vs celiac. I so appreciate all of your info. Thank you!

I was saying that I thought going back on gluten might "kill" me b/c I am so recently off of it and still feeling so sick. I am HAPPY to have an endoscopy, knowing that I have to go back on gluten in order to get a dx. I think you are saying that the biopsy needs to be specific for celiac, right? I know I don't have Crohn's - my symptoms don't follow that of Crohn's at all. I'm agreeing to colonoscopy because I'm 55 and never had one. It's time. And, I'm clearly having problems.

So, if I go back on gluten, have an endoscopy with a biopsy specific to celiac - will that lead to a diagnosis or are there false negatives in a biopsy too? How long should I be back on gluten. Someone said at least 3 weeks. I've only been off gluten for 3 weeks so I am likely still showing signs in my gut.

I have been allergic to fresh fruit since I was 14 years old. While I have other food sensitivities, the fruit response is clearly allergy. The fast loss of food is all the other food that I was eating and couldn't keep in me. I am just learning about malabsorption. I just don't know why I am gaining weight instead of losing. Malabsorption should lead to weight loss, right? I'm feeling vulnerable, a bit scared and definitely abused by my PCP who treats me terribly, even though this is the first time I have ever complained about anything!

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The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".

An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)

With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.

Tom, I did NOT discourage an endoscopy. :o I said she needs an endoscopy with BIOPSY so she can get an accurate DX. I agree she needs BOTH--colonoscopy and endoscopy with biopsy--if on the same day, all the better. I was trying to clarify that a biopsy will be a more accurate DX, that's all.

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Thanks, Tom. I am hoping the endoscopy will be scheduled tomorrow. My PCP told me to go back on gluten but I'm waiting to get the date of endo so I don't suffer too soon. I have been on gluten-free for 3 weeks and still have a lot of pain and bloating. Eating anything hurts right now. But I'm better than I was 3 weeks ago. I don't have a GI doctor yet, but the one who I am scheduled to have colonoscopy is supposed to be excellent so I'm hoping she will do the two together and then refer me to the Celiac program at same hospital where there are GI's who specialize in this.

It's the best I can hope for right now.

I guess for me the big question is - is this celiac or severe gluten-intolerance (ie. not autoimmune)? I don't think I can know that without the biopsy. Am I correct? Thanks!

The longer the period of gluten free eating, the less chance of a positive endoscopic biopsy. That is to say, that gluten-loading just before the endoscopy is not enough to do the trick. The lack of a positive biopsy does not indicate that you do not have celiac; it just means that a) you have done sufficient healing since stopping gluten for it to not show clearly any more, B. they did not biopsy a celiac patch, or c) you have not yet done enough damage to your GI tract - OR that you are what is currently defined as non-celiac gluten intolerant. And there is no reason not to do celiac endoscopic biopsies while they are doing the colonoscopy.

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I was saying that I thought going back on gluten might "kill" me b/c I am so recently off of it and still feeling so sick. I am HAPPY to have an endoscopy, knowing that I have to go back on gluten in order to get a dx. I think you are saying that the biopsy needs to be specific for celiac, right?

Yes, that is what I was trying to say. But I see MUSHROOM has just posted, so I will not repeat it all. :)

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I've only been off gluten for 3 weeks so I am likely still showing signs in my gut.

I have been allergic to fresh fruit since I was 14 years old. While I have other food sensitivities, the fruit response is clearly allergy. The fast loss of food is all the other food that I was eating and couldn't keep in me. I am just learning about malabsorption. I just don't know why I am gaining weight instead of losing. Malabsorption should lead to weight loss, right? I'm feeling vulnerable, a bit scared and definitely abused by my PCP who treats me terribly, even though this is the first time I have ever complained about anything!

Okay, you have fruit allergies IN ADDITION to a gluten problem --I see. That was not clear to me before this post. I thought you meant all food was "passing through you". Sorry.

Losing food could very well be malabsorption, yes. IMHO

I know how hard it is to feel this way and not be taken seriously. :(

I think you are wise to have both procedures done --if it will make you feel better to have a sense of what "may be going on down there".

So many people have negative or erroneous results and the doctors assume that gluten is not a problem and then, people continue to have issues anyway.

NCGI can do serious damage, too.

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The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".

An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)

With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.

Well, Tom....let me enlighten you on why some people would refuse an endo. When I was diagnosed, I was so violently ill, I could not hold food down and was beyond nauseous so doing any tests that would involve putting a scope down your throat was really not an option. I also have Sjogren's Syndrome and have severe dry mouth and throat. That can make doing an endo dicey. I failed every diagnostic test by huge numbers, have a double DQ2 Celiac gene and when I went gluten free, the explosive, watery Big D completely stopped after 3 days on the diet. Pretty miraculous considering I was down to 97 pounds and as dehydrated as you get. I had my diagnosis.

As I have said before, if a person does not recover fully on the gluten-free diet or develops other symptoms that warrant a scoping, so be it. But for those of us who recovered well, albeit over a period of time, and feel well to this day and have had a complete resolution of symptoms, the scope is not necessary....unless you want to have one.

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Kswan08,

I started doing research on vitamin deficiencies and weight gain because if you are Celiac you can either gain or lose weight due to malnutrition. I got tired and stopped at vitamin D, vitamin C and calcium deficiencies, all of which can cause you body to hang on to weight. There are other vitamins and mineraldeficiencies that also cause this.

If you cannot eat fruit and are having difficulty with vegetables, and you are not absorbing correctly, the vitamin deficiencies could be contributing to your weight gain. I believe this is what happened to me. Once I went gluten free and started supplementing everything about my metabolism stabilized and I started losing weight.

Ask for vitamin levels to be checked and start supplements.

Here is some information on Vitmain C deficiency

http://www.nlm.nih.gov/medlineplus/ency/article/002404.htm

Oh yeah, and B12 too.

http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes

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The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT".

I'm sorry, but it is my understanding (and my own unfortunate experience that had me dying a slow death for 2 years ) that an endoscopy ALONE will NOT DX celiac.

She said she was having an endo scheduled. I suggested she needed a biopsy done during that endo.

She cannot get the doctor to take her seriously --so NO, I would not "assume" that the biopsy is a "given".

It was not a given in my case, but I did not find that out until 2 years later that it was not done, when I saw the report from the doctor when I secured all my medical files and knew what the hell was going on inside me and what he SHOULD have done. I was so sick and incapacitated by then, the new GI said "what the hell was he thinking NOT biopsying back then?"

Why are you arguing with me about this anyway? :unsure: I don't get it.

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The longer the period of gluten free eating, the less chance of a positive endoscopic biopsy. That is to say, that gluten-loading just before the endoscopy is not enough to do the trick. The lack of a positive biopsy does not indicate that you do not have celiac; it just means that a) you have done sufficient healing since stopping gluten for it to not show clearly any more, B. they did not biopsy a celiac patch, or c) you have not yet done enough damage to your GI tract - OR that you are what is currently defined as non-celiac gluten intolerant. And there is no reason not to do celiac endoscopic biopsies while they are doing the colonoscopy.

Here's what I was thinking... I would hold off to start eating gluten until I am a month away from endo. I still haven't heard anything. My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness is overwhelming .. grrr. As if I'm not scared enough. Same doctor that said I didn't have Vit D deficiency until I insisted on a test. And am on my third round of 50 thousand units of D b/c my body is not "holding onto the D." She refused testing me for any other deficiencies stating it wasn't necessary. Sigh.

So .. I am still bloated, today had cramping, wake in the night feeling nauseous and my wonderful doctor doesn't really care. Why would these symptoms lead to thoughts of cancer and not gluten intolerance or celiac?

Also, why am I still suffering with bloating and some pain despite not eating gluten or lactose? Some have mentioned my gut needing healing time, others that I may still be ingesting gluten or other food that is causing problems without knowing it. What I hope you can tell me is should I feel 100% better three weeks off gluten and lactose or is it common to still feel symptomatic. I felt better last week than I do this. I am discouraged and scared. I am grateful for the support you have all shared with me.

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Vitamin D can cause weight gain? If I'm not absorbing properly it can cause weight gain? How can I stabilize my system? Should I take the vitamins or not take them? I think my body is in trouble and this has been "brewing" for a long time....

Kswan08,

I started doing research on vitamin deficiencies and weight gain because if you are Celiac you can either gain or lose weight due to malnutrition. I got tired and stopped at vitamin D, vitamin C and calcium deficiencies, all of which can cause you body to hang on to weight. There are other vitamins and mineraldeficiencies that also cause this.

If you cannot eat fruit and are having difficulty with vegetables, and you are not absorbing correctly, the vitamin deficiencies could be contributing to your weight gain. I believe this is what happened to me. Once I went gluten free and started supplementing everything about my metabolism stabilized and I started losing weight.

Ask for vitamin levels to be checked and start supplements.

Here is some information on Vitmain C deficiency

http://www.nlm.nih.gov/medlineplus/ency/article/002404.htm

Oh yeah, and B12 too.

http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes

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My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness is overwhelming .. grrr.

LET you have one? :rolleyes: Again, make sure there is a BIOPSY done as well.

Oh for Pete's sake!!...this idiot PCP doesn't know what the hell he is talking about! he needs to read a medical journal once and awhile. It is this kind of thinking that kept most of sick and dying. :angry:

Do you know how many people in their 50s, 60s, & 70's and older are FINALLY Dxed with celiac??

I was 53. And my PCP,a man with 3 celiac kids, left me unDXed for 12 years. He had to apologize to me, citing "well, I just did not know how it manifests in adults".

<_<

Please, read this article and print it off for this (*&^@)) can't say what I want to-

Hon, seriously, you are getting the same runaround most of us got for years. You do not want to end up as deathly ill as I was.

Are you in upstate NY by any chance? I will walk you into my GI guy. You deserve better.

http://www.livingwithout.com/issues/4_17/senior_celiacs-2720-1.html

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Also, why am I still suffering with bloating and some pain despite not eating gluten or lactose? Some have mentioned my gut needing healing time, others that I may still be ingesting gluten or other food that is causing problems without knowing it. What I hope you can tell me is should I feel 100% better three weeks off gluten and lactose or is it common to still feel symptomatic. I felt better last week than I do this. I am discouraged and scared. I am grateful for the support you have all shared with me.

No, you should not feel 100% better three weeks off gluten or lactose. You would be an extremely lucky soul if you did. Many of us take years to completely heal, if we ever do. If you are continuing to feel better as time passes, then you are on the right path and should be encouraged and delighted :) The path to recovery can be an up-and-down one, better one week, not so good the next, but with a general trend upward. Sometimes, unfortunately, another food intolerance may rear its head, one that has been masked by the gluten response previously and something to look out for, but you may be lucky enough to avoid this problem. And every now and then some gluten is going to find its way onto your dinner plate - or in a medication or some other unexpected place. And you will know it, but it's not the end of the world.

Be encouraged that there is light at the end of the tunnel. Keep the faith.

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Vitamin D can cause weight gain? If I'm not absorbing properly it can cause weight gain? How can I stabilize my system? Should I take the vitamins or not take them? I think my body is in trouble and this has been "brewing" for a long time....

Oh no!

What I was saying is...

Vitamin Deficiencies can cause weight gain.

By all means take your vitamins.

My post was about being deficient and that results in the weight gain.

You are very deficient in D and that could have contributed to your weight gain. Supplementing will help you stabilize. I also think you are probably deficient in C due to not being able to eat fruit or tolerate vegetables.

The links I provided were about what can happen to your body when you deficient in certain vitamins and minerals.

It may all correct itself once you are absorbing and supplementing.

While you are pursuing medical care, take your vitamins!

http://www.medicalnewstoday.com/articles/247056.php

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kswan, SOY can make you bloat like crazy! Many celiacs have problems with soy so if you are eating anything containing soy you can try elimiating that from your diet & see what happens. Soy makes me bloat like you wouldn't believe --- like I'm 15 months pregnant!!!! I will bloat so bloat so badly that I literally feel like my abdomen/stomach/intestines are going to explode & there will little pieces of me splattered all over the place. I'm sorry if that's too graphic but that is exactly the way soy bloat can make me feel.

Personally, I would take the advice of IrishHeart, mushroom, eatmeatforgood, Gemini, bartful, FernW, justlisa, GFinDc, MitiziG, beachbirdie, TiaMichi2 & jestgar. These people know what they are talking about. And they can get very passionate about it but that is only because they have been at death's door from celiac disease & doctors who don't know what they are doing/talking about OR have seen enough on this board of people who have gone on needlessly suffering & doing damage to their bodies b/c of inept doctors. The very same kind of doctors who think celiac is a fad. The very same doctors who think "you don't get celiac at age 50" --- actually you usually don't "get" it at 50 --- it's BEEN there for years & years & years UNDIAGNOSED.

*edited to add jestgar*

Edited by squirmingitch
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Yes, "let me have one"! I am changing doctors but the one I want is on maternity leave until September. I figured it was best to stay with this one until then.

I did specifically request a biopsy for celiac be done and stated that that would be the purpose of the endo. I will follow-up with the GI doc when the appointment is scheduled. The fact that I can't get my doctor to push this through is frustrating the heck out of me!

At this point, I'm wishing I lived near one of you and could go to a highly recommended doc who wouldn't think I was "exaggerating."

Thanks for the article...

LET you have one? :rolleyes: Again, make sure there is a BIOPSY done as well.

Oh for Pete's sake!!...this idiot PCP doesn't know what the hell he is talking about! Read a medical journal once and while. It is this kind of thinking that kept most of sick and dying. :angry:

Do you know how many people in their 50s, 60s, & 70's and older are FINALLY Dxed with celiac??

I was 53. And my PCP,a man with 3 celiac kids, left me unDXed for 12 years. He had to apologize to me, citing "well, I just did not know how it manifests in adults".

<_<

Please, read this article and print it off for this asshat and/or get yourself a new doctor.

Hon, seriously, you are getting the same runaround most of us got for years. You do not want to end up as deathly ill as I was.

Are you in upstate NY by any chance? I will walk you into my GI guy. You deserve better.

http://www.livingwithout.com/issues/4_17/senior_celiacs-2720-1.html

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Okay, thanks for clarifying, I was confused! I have had severe vitamin deficiencies for years and have had to be treated. I have trouble with C - makes me sick (surprise!). Any forms that will not create reaction, allergy or vomiting? I don't know how to get my doc to test me for vitamin deficiencies. She's increasingly hostile because I'm "pushing" issues right now. It didn't look good for her that she refused my vitamin D test and when I finally pushed hard enough, she realized I was severely deficient. This is the same doctor who put me on two heart med's - and when I had a reaction and called her - said, "Why are you taking Nadalol and who prescribed that! You should not be on that!" OMG! I knew then it was time to leave her, but it's not easy finding a PCP worth their salt.

Thanks for the link and helping me to understand and hang in there....

Oh no!

What I was saying is...

Vitamin Deficiencies can cause weight gain.

By all means take your vitamins.

My post was about being deficient and that results in the weight gain.

You are very deficient in D and that could have contributed to your weight gain. Supplementing will help you stabilize. I also think you are probably deficient in C due to not being able to eat fruit or tolerate vegetables.

The links I provided were about what can happen to your body when you deficient in certain vitamins and minerals.

It may all correct itself once you are absorbing and supplementing.

While you are pursuing medical care, take your vitamins!

http://www.medicalnewstoday.com/articles/247056.php

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Oh - one more question. The PCP told me to take Prilosec twice a day as well as Align twice a day. Expensive, not covered by insurance so I just want to know what the consensus here is. I've been taking both for 2+ weeks. Reflux is better but not sure what the probiotics are doing, if anything.

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Yes, "let me have one"! I am changing doctors but the one I want is on maternity leave until September. I figured it was best to stay with this one until then.

I did specifically request a biopsy for celiac be done and stated that that would be the purpose of the endo. I will follow-up with the GI doc when the appointment is scheduled. The fact that I can't get my doctor to push this through is frustrating the heck out of me!

At this point, I'm wishing I lived near one of you and could go to a highly recommended doc who wouldn't think I was "exaggerating."

Thanks for the article...

You are welcome, hon.

You are doing all you can.

None of us think you are exaggerating! :)

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Hi Kswan,

You asked if you would feel better in 3 weeks gluten-free. The answer is probably, but not 100% better. Healing takes time, and when you start gluten-free you may develop SIBO, (small intestine bacterial overgrowth) symptoms. The problem is your guts are a symbiosis of bacteria and your own body. The bacteria help digest food and other good things for you. But there are nasty strains too and any of them can get kind of out of control at times. Gluten-free is a major diet change for many people and that can cause the bacteria strains to get out of wonk. It can help to stop dairy for a while and also limit sugar and starchy carbs. When you aren't digesting well the bacteria have a field day and make lots of gas. This is what happens with lactose intolerance also. Rather long way of saying that yes, the healing process is not a straight line to 100%, it is often somewhat up and down or back and forth. Another issue is that often people here report becoming more sensitive to gluten after being off it a little while. It seems like symptoms are more pronounced and sometimes the reactions are worse.

The usual time recommended for eating gluten before the biopsy is 3 months, not 3 weeks. But some people find they can't do 3 months because of the symptoms. Personally, I didn't do it as I had to work and that was not going be possible if I was eating gluten. And I had been off gluten 4 months or so before getting an appointment for testing. So it was really a useless thing to do testing at that point. So I flunked the blood antibody tests but I passed the symptoms test. My body hates gluten and it leaves no doubt about it.

Here is some info on various topics. The meal idea threads are just to let you know that life goes on after celiac and gluten-free and there is actually plenty of food to eat. You may end up cooking more food than before but it is not the end of the world.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

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kswan, Irish Heart can certainly get overly passionate at times, as you can see. :o

Read from those who have posted and make the best choice for you. I wish you success. :)

If by calling me "overly passionate", you mean wanting to help a woman who is in the exact same boat as I was for many years--and wanting to help her stop struggling and get the right help from a doctor ?...well, then, then yes, that's what I am.

I offered my thoughts, IMHO and based on the "medical criteria" most celiac centers offer.

Just trying to help.

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Personally, I would take the advice of ...

Please keep in mind that no one on this forum has medical or nutritional training (that I know of) except as it pertains to their own situation. People are offering their opinions based on their own histories. What any individual says may, or may not, pertain to you.

I realize this is difficult, but this is your own personal journey, following someone else's journey is unlikely to be the most beneficial avenue. Weigh what people are saying, research what seems most relevant to you, and make your own decisions.

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If by calling me "overly passionate", you mean wanting to help a woman who is in the exact same boat as I was for many years--and wanting to help her stop struggling and get the right help from a doctor ?...well, then, then yes, that's what I am.

This is her boat. Telling her what to do has the potential to cause as much harm as good.

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This is her boat. Telling her what to do has the potential to cause as much harm as good.

But, I did not tell her what to do, Jess.

I offered her my thoughts----as did everyone else--none of which are harmful.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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