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Disappointing Doctors Visit


Booghead

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Booghead Contributor

Well after being told my blood panel for Celiacs was positive the doctor ordered an EGD. To confirm the positive blood.

Today was my followup and as it turns out: there was no positive blood to begin with. ALL of my celiacs tests were completely negative. I'm so frustrated. I cried after the appointment, this is basically like being lied too. I went off gluten because false postives are rare.

He read the blood wrong. My thyroid is hyperactive. I don't know what this means. They are testing more of my blood and sending me to my family doctor. GI doctors don't do thyroids i'm told.

I told all my family, friends, and teachers about the Celiacs. What do I do now?

All in All I am very depressed (don't get me wrong, i am glad I don't have celiacs. I am just depressed because I thought I finally had an answer to my problems. Going with my mom to talk to my principal in a few. He hasn't veen so supportive so I don't think he will be now.

Any one know what a hyperactive thyroid is? And what it means to me? I guess I better find a new forum. :huh:

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eatmeat4good Enthusiast

You can have gluten intolerance which can cause as many problems for you as Celiac. The only way to know is to continue to be gluten free and observe your symptoms. Celiac can be falsely negative...so if in fact you want to continue being gluten free and challenge later by eating gluten then you don't have to tell everyone you are negative for Celiac. Your antibodies can change and you may test positive later. The important thing right now is to decide if you want to stay off of gluten on the chance that you have Celiac that is not showing on the test, or if you have gluten intolerance. Thyroid problems are common with Celiac. Medications can help get that in line for you. See your Dr. about the thyroid but continue to observe your symptoms related to gluten. It would be a travesty for you to miss this, leave the forum, continue to have multiple symptoms with no answer and find out years later that this is what you have all along and you were right to suspect it. It happened to me.

:( Don't lose hope.

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MenHen Rookie

I am so sorry! That is very frustrating!

There are a lot of otheres out there that have more experience and/or knowledge than I do. However, I would not discount Celiac. Over and over you see how it is misdiagnosed. Also, thyroid problems and celiac are common. Has the gluten free diet made you feel better or helped you in any way? You could still have gluten intolerance at least. You never had the biopsy, right? Also, if your doctor gave you the wrong blood results, is he trustworthy? I wouldn't trust a doctor that gave me the wrong results, especially on something such a major disease. Please try to take a step back from your frustration and think about all that you have gone through. If gluten free is good for you, take advantage of starting that at such a young age. Don't continue to poison yourself just based on one doctor's diagnosis. The only true test is through the diet.

Hyperthyroid is an overactive thyroid. The thyroid is hormone regulated. If you google it, you will find plenty of information on it.

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IrishHeart Veteran

I cried after the appointment, this is basically like being lied too. I went off gluten because false postives are rare.

He read the blood wrong. My thyroid is hyperactive. I don't know what this means. They are testing more of my blood and sending me to my family doctor. GI doctors don't do thyroids i'm told.

I told all my family, friends, and teachers about the Celiacs. What do I do now?

All in All I am very depressed (don't get me wrong, i am glad I don't have celiacs. I am just depressed because I thought I finally had an answer to my problems. Going with my mom to talk to my principal in a few. He hasn't veen so supportive so I don't think he will be now.

Any one know what a hyperactive thyroid is? And what it means to me? I guess I better find a new forum. :huh:

Idiot doctor, yes :angry: ...BUT YOU just TOLD US in a post a few days ago that YOU FELT SO MUCH BETTER after going gluten-free! and felt lousy after being glutened. Right? So, gluten IS a problem for you.

I had both hypothyroid and Hyperthryoid symptoms in the 3 years I was undiagnosed. I felt like crap and they put me on meds and I still felt like crap. It was the gluten. Now, my thyroid functions NORMALLY. I take NO meds for it.

Gluten/celiac is OFTEN linked to thyroid disruption.

How could he have misread the thyroid panel AND the celiac panel??? :blink: . This guy is useless.

Your positive response to the gluten-free diet is more reliable than he is.

A GP is not going to be helpful with endocrine system disorders, hon.

You need an endocrinologist and I would get copies of the celiac panel and all your blood work and take it to that doctor. Tell your MOM you need verification. Any endo worth her salt will run the tests for thyroid dysfunction again.

I use CAPS for emphasis when I write, I am not yelling at you sweetie :) I want you to feel better!!

Hugs and good luck, Irish

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Booghead Contributor

I think I i will still gluten free for the most part. Though the doctor made it sound like its REALLY RARE for a person to have Celiacs and not have either test positive.

He says he has no idea why I feel better off of gluten.

They took more blood for the thyroid and they are sending the results to my primary pyshcian. I hate some gluten today, don't feel terrible but feel tired. Head ache (but I am assuming thats from the upsetting news I got).

Perhaps my positive results to gluten free are because I ate a lot more fiber and healthy foods.

I don't know... Maybe I got sick when I ate "gluten" because of other things (food allergies are common in my family). I just don't know if I should listen to you guys or if it really is just my thyroid.

I belive my thyroid test was :5.79 range was 1-4.5

So I don't even know if this new set of tests will come back positive again. Stupid doctor perscribed more benefiber, I HATE BENEFIBER. I have taken it so many times. It is gross. It tastes terrible. I'M NOT CONSTIPATED!!! I have done a little research and hyper thyroid does not cause stomach pain. Or Constipation. This is crap.

I don't know If I can keep going gluten free when my parents now think its just the thyroid. (maybe it is just the thyroid). Going to eat gluten until my next doctors appointment on Tuesday. See how I feel.

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kareng Grand Master

I agree with Irish.

You need to get copies of the actual tests, biopsies, etc. maybe he is reading the tests wrong now. Maybe he didn't even do the correct tests.

When I was a teen, I had a thyroid issue. It's not normal for teens to have a bad thyroid. You need an endocrinologist.

If your mom doesn't get this, put her on here & let us talk to her.

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kareng Grand Master

I think we were posting at the same time.

Eating more fiber is better than Benefiber. Maybe you aren't sensitive to gluten. The healthier diet with more fiber, less dairy, & less junk food maybe why your gut feels better. Try to keep up the healthier part.

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Booghead Contributor

He did the correct tests. I was shown the results.

It looked like this(of course more techincal):

Thyroid: 5.79 range 1-4.5

Celiacs:

IgA: >2 range 1-3

IgG: >2 range 1-3

(I can't remember all the ranges and outcomes. But the thyroid one is correct^). The doctor "read" the wrong one. The thyroid was highlighted in red and the celiacs panel was right underneath. He didn't do the wrong blood work. He is very old (like 75) and I can see how he could make the mistake. I do not see how someone else didn't check his work though.

I'm too tired for this.

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kareng Grand Master

He did the correct tests. I was shown the results.

It looked like this(of course more techincal):

Thyroid: 5.79 range 1-4.5

Celiacs:

IgA: >2 range 1-3

IgG: >2 range 1-3

(I can't remember all the ranges and outcomes. But the thyroid one is correct^). The doctor "read" the wrong one. The thyroid was highlighted in red and the celiacs panel was right underneath. He didn't do the wrong blood work. He is very old (like 75) and I can see how he could make the mistake. I do not see how someone else didn't check his work though.

I'm too tired for this.

Thyroid issues can make you tired. There are usually several thyroid levels that are tested for but your GP should know that.

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IrishHeart Veteran

He did the correct tests. I was shown the results.

It looked like this(of course more techincal):

Thyroid: 5.79 range 1-4.5

Celiacs:

IgA: >2 range 1-3

IgG: >2 range 1-3

(I can't remember all the ranges and outcomes. But the thyroid one is correct^). The doctor "read" the wrong one. The thyroid was highlighted in red and the celiacs panel was right underneath. He didn't do the wrong blood work. He is very old (like 75) and I can see how he could make the mistake. I do not see how someone else didn't check his work though.

I'm too tired for this.

First of all, you are not HYPERthyroid, hon.

A TSH of 5.79 is slightly HYPOthyroid not HYPERthyroid.

HYPOthyroid is an underactive thyroid and causes fatigue and constipation is the most common autoimmune disease associated with gluten intolerance.

HYPERthyroid is an overactive thyroid. Your numbers would be LESS than 1.

the range reads like this:

.5_____1_______2_______3________4.5

HYPER............................................HYPO

HYPOTHYROID symptoms are fatigue, constipation, hair thinning, feeling cold, depression, etc.

The autoimmune disease most commonly associated with gluten intolerance and celiac is HYPOTHYROIDISM.

Your symptoms may just disappear if you remain gluten free. Maybe you need some meds. Have the endo run a THYROID ANTIBODIES test.

You need a second opinion from an ENDOCRINOLOGIST who specializes in thyroid disease. Just my humble opinion. But I've been there /done that with the thyroid BS and now, I am asymptomatic.

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MenHen Rookie

I think I i will still gluten free for the most part. Though the doctor made it sound like its REALLY RARE for a person to have Celiacs and not have either test positive.

He says he has no idea why I feel better off of gluten.

They took more blood for the thyroid and they are sending the results to my primary pyshcian. I hate some gluten today, don't feel terrible but feel tired. Head ache (but I am assuming thats from the upsetting news I got).

Perhaps my positive results to gluten free are because I ate a lot more fiber and healthy foods.

I don't know... Maybe I got sick when I ate "gluten" because of other things (food allergies are common in my family). I just don't know if I should listen to you guys or if it really is just my thyroid.

I belive my thyroid test was :5.79 range was 1-4.5

So I don't even know if this new set of tests will come back positive again. Stupid doctor perscribed more benefiber, I HATE BENEFIBER. I have taken it so many times. It is gross. It tastes terrible. I'M NOT CONSTIPATED!!! I have done a little research and hyper thyroid does not cause stomach pain. Or Constipation. This is crap.

I don't know If I can keep going gluten free when my parents now think its just the thyroid. (maybe it is just the thyroid). Going to eat gluten until my next doctors appointment on Tuesday. See how I feel.

I agree with Irish.

You need to get copies of the actual tests, biopsies, etc. maybe he is reading the tests wrong now. Maybe he didn't even do the correct tests.

When I was a teen, I had a thyroid issue. It's not normal for teens to have a bad thyroid. You need an endocrinologist.

If your mom doesn't get this, put her on here & let us talk to her.

I don't think many people on here will tell you what to do. What we are saying is don't always trust everything a doctor tells you. Especially one that has already messed up your results. You need to be sure to listen to your body and take into account of what you feel and think. It may not be gluten. It could be another food allergy. Only your body truly has the answers. Just don't discount that you can still be gluten intolerant or have Celiac. If you haven't already been doing this, I would recommend keeping a food diary. I understand your mom would be hesitant to support you if the doctor told you that you don't have Celiac. Maybe the food diary could come in handy. You could keep it up to date along with your symptoms throughout the day. You and your mom could go over it together and play detective. I would definitely follow up with an endocronoligst regardless.

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pricklypear1971 Community Regular

....and unless I missed something up there you are IGA deficient which means your iga is invalid. And I don't see other Celiac blood tests. We're there more?????

Does the Igg mean anything in absence of other tests?

Someone else chime in....

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IrishHeart Veteran

I had questions about your celiac panel as well.

Shouldn't there be more results than that?

Blood tests are often NEG and the person has celiac nonetheless. (me, for example) and so, I am guessing, he has cancelled the biopsy???

Time for a new GI as well???

We're not telling you what to do. We're offering advice based on personal experiences. We're concerned that you may fall through the cracks like we all did. You don't want to develop the symptoms we did because a NEGLIGENT doctor missed what was right in front of him.

If it's not gluten or celiac, then...fantastic. But if it is, you need to follow through with appropriate treatment.

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Booghead Contributor

He already did the biopsy. In the colonoscopy and EGD. Both were negative for anything. Including Celiac Disease. B) Thanks for being patient with me. And thanks Irish for explaing HYPO and HYPER to me. Thought they were the same.

Been having a lot more itching and dry skin lately. Spotches of red skin, like little circles. I couldn't get to sleep last night because everytime I moved it hurt. My skin is so dry it feels like a sunburn. I am using a mosturizing lotion after I shower. I also have a humidifier in my room. I have been putting vaseline on the very dry parts.

Considering Sjogrens. Dry eyes, dry skin, among several other symptoms associated with this. As of now we are not seeing a Endo, the GI assistant told us to see our GP and that Endos only take very strange or peculiar cases. I am so sick of being told I'm not sick enough.

My skin on my elbows feels like its raw but it looks fine.

Also the symptoms you posted for a hypo thyroid are things I have, that I never considered symptoms, i.e. being cold (shivering as I type this), my hair has gotten thinner the past few years. Sometimes I shiver when I get nervous, or anxious.

Should I start limiting the showers I take to keep my skin more moist? I live in utah, the LEAST humid state in the country (I don't really know if thats true >.<) It is bone dry right now, and its cold and windy. Not helping my skin in the least. I have some rashes under my arms (not my armpits), the sides of my arms that rub my shirt. I have never had a problem with our detergent and I have used the same beauty products for a while. I don't know what's causing the dryness.

I hate "diagnosing" myself with things like sjogrens, but it makes so much sense with how I have been feeling lately. Thanks for being so nice you guys. Also I think there were just 2 tests run for the celiacs panel. They took blood to test for T4 and T3 levels in the thyroid I believe.

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pricklypear1971 Community Regular

He already did the biopsy. In the colonoscopy and EGD. Both were negative for anything. Including Celiac Disease. B) Thanks for being patient with me. And thanks Irish for explaing HYPO and HYPER to me. Thought they were the same.

Been having a lot more itching and dry skin lately. Spotches of red skin, like little circles. I couldn't get to sleep last night because everytime I moved it hurt. My skin is so dry it feels like a sunburn. I am using a mosturizing lotion after I shower. I also have a humidifier in my room. I have been putting vaseline on the very dry parts.

Considering Sjogrens. Dry eyes, dry skin, among several other symptoms associated with this. As of now we are not seeing a Endo, the GI assistant told us to see our GP and that Endos only take very strange or peculiar cases. I am so sick of being told I'm not sick enough.

My skin on my elbows feels like its raw but it looks fine.

Also the symptoms you posted for a hypo thyroid are things I have, that I never considered symptoms, i.e. being cold (shivering as I type this), my hair has gotten thinner the past few years. Sometimes I shiver when I get nervous, or anxious.

Should I start limiting the showers I take to keep my skin more moist? I live in utah, the LEAST humid state in the country (I don't really know if thats true >.<) It is bone dry right now, and its cold and windy. Not helping my skin in the least. I have some rashes under my arms (not my armpits), the sides of my arms that rub my shirt. I have never had a problem with our detergent and I have used the same beauty products for a while. I don't know what's causing the dryness.

I hate "diagnosing" myself with things like sjogrens, but it makes so much sense with how I have been feeling lately. Thanks for being so nice you guys. Also I think there were just 2 tests run for the celiacs panel. They took blood to test for T4 and T3 levels in the thyroid I believe.

Well, first you need to know if you have Hashimoto's Thyroiditis or not. That blood test is a TPO. Demand it.

Second, get a copy of ALL of your test results. You may find surprising things there. Many have in the past.

Third, being hypothyroid can make you miserable. You are having symptoms and you sound like you need medication. Hypothyroidism can cause all of your symptoms - you don't need Sjogrens to account for your issues.

Fourth, I'd wait to read your endoscopy results and all blood work before you decide you don't have something going on (gluten, milk, etc.) besides thyroid.

Get a good thick lotion like Vanicream for your skin. If you have a humidifier it will help.

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IrishHeart Veteran

Been having a lot more itching and dry skin lately. Spotches of red skin, like little circles.

As of now we are not seeing a Endo, the GI assistant told us to see our GP and that Endos only take very strange or peculiar cases..

Also the symptoms you posted for a hypo thyroid are things I have, that I never considered symptoms, i.e. being cold (shivering as I type this), my hair has gotten thinner the past few years. Sometimes I shiver when I get nervous, or anxious.

Thanks for being so nice you guys. Also I think there were just 2 tests run for the celiacs panel. They took blood to test for T4 and T3 levels in the thyroid I believe.

Oh man, that is completely untrue--- "endos only take strange or peculiar cases".??waaa???

:blink:

Endos are specialists for endocrine system problems WHICH you HAVE. And BTW, itching and dry skin are also HYPOthyroid problems. (But, they are also celiac symptoms.)

The GP will likely start you on generic levothyroxine and run no further tests. What if you do not need it? what if it's not that? I am telling you this because I was put on meds by the GP and the endo's office kept me on meds for another year and a half and I did not even need to be on them in the first place. They made me worse. :huh: You need to have a thyroid antibodies test done to determine if there is really an autoimmune attack going on.

Geesh, kiddo. I feel like you're getting a major run-around here --and some poor advice--from this GI's office. IMHO

The celiac panel is MORE than 2 tests--as far as I know. If you think you have Sjrogen's--well, that's a pretty serious autoimmune disease that requires specific testing to diagnose. Have you had an ANA done?

Any and all of the symptoms you describe were mine---including the shivering, feeling cold--- and my body temp was 94.5 and I had to put on a sweat suit in summer. I could not break a sweat in a sauna. :blink: I am not kidding. I was itching and my skin burned constantly. I had DRY scratchy eyes, dry sore mouth, burning tongue, thin hair, red sores on my scalp, peeling scalp, etc---for 3+ years and they were all caused by celiac. Some of them are endocrine-related problems involving the adrenals--which are deeply impacted by this disease process.

In time, off gluten, they have all resolved. Except my hair--that's still growing in--and I still have burning sensations and severe joint/bone/muscle pain. But I was ill for a long time.

So if they have you convinced it's not celiac or gluten---and you have all these symptoms related to the endocrine system---then wouldn't it be wise to see someone who can help you with that?

Just sayin.

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Takala Enthusiast

Has anyone mentioned yet that BENEFIBER is NOT really gluten free ? :ph34r:<_<:blink:

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Booghead Contributor

Never have had an ANA done. I hear sjogrens can't really be treated so I don't see the point in getting tested for it. But if hashimotos can cause all the eye problems too then it probably is that and not sjogrens.

Had breaded chicken and pizza today. Feeling same as before (not feeling 100% but not feeling overaly sick). My arms have both rashed out. My only other choice is to put vaseline on them so thats what I'm going to do. They hurt so bad.

I am not taking benefibr gluten free or not. I hate it. Its nasty stuff. I think most Celiac Panels are more then 2 but mine was only 2. My mom thinks my thyroid is barely hypo. She thinks 5.79 in a range of 1-4.5 is not that high. So my question is: how high is that really? And I do sweat. But have much less in the past few years, I use to sweat a ton and now its pretty rare. But it does happen in the heat. I do get hot. So I guess I'm not that cold overall.

My GP is very nice. He has only been practicing for 3 years and my hopes are if he doesn't know what to do that he will send me to an endo. Either way I hope I deal with some better doctors. Some doctors who know something.

My GP diagnosed my about 4 months ago with "constipation" like always (this was my first time seeing this doctor). Now my GI has done the same by telling me I need benefiber so I am just hoping my GP won't think just about the constipation. At this moment it is my least troubling symptom. These rashes are the worst. I just hope they start to get better because my appointment isn't for a week and I can't hold out that long with these terrible rashes.

I think I might have to quit showering... I took a colder shower tonight and put lotion on but then the rashes showed up. I didn't use soap this time either.

I've been through the ringer. But from what I can tell tonight is I don't have celiacs because you are all in so much pain when you get a little glutened and I ate a lot of gluten and I don't feel worse. I still feel "bad" but not worse.

You guys make me feel so welcome here. Thanks! Going to try to go to bed. B)

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MissHaberdasher Apprentice

I don't think many people on here will tell you what to do. What we are saying is don't always trust everything a doctor tells you. Especially one that has already messed up your results. You need to be sure to listen to your body and take into account of what you feel and think. It may not be gluten. It could be another food allergy. Only your body truly has the answers. Just don't discount that you can still be gluten intolerant or have Celiac. If you haven't already been doing this, I would recommend keeping a food diary. I understand your mom would be hesitant to support you if the doctor told you that you don't have Celiac. Maybe the food diary could come in handy. You could keep it up to date along with your symptoms throughout the day. You and your mom could go over it together and play detective. I would definitely follow up with an endocronoligst regardless.

My blood test showed up negative, but I still have the signs an symptoms of gluten intolerance/wheat allergy. Get a second opinion or speak with a specialist. I'm still struggling because I haven't done this. I am still doubting myself but as much as I hate to say it, I feel better. -_-

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love2travel Mentor

I've been through the ringer. But from what I can tell tonight is I don't have celiacs because you are all in so much pain when you get a little glutened and I ate a lot of gluten and I don't feel worse. I still feel "bad" but not worse.

So sorry to tell you this but that is not the case. I did not feel the slightest bit ill when I ate gluten. When I pigged out on gluten for nearly four months for my gluten challenge I LOVED it. I had been off gluten several months first. In fact, after eight months being strictly gluten free, I sometimes question my celiac diagnosis. Then I remember the positive bloodwork (false positives are rare) and my villi were flattened on biopsy (but sometimes wonder if it is due to something else). Now a few related things make sense - I have fibromyalgia which can certainly be related. It also explains my miscarriages. Plus distant family members also have celiac.

There are others who are virtually asymptomatic, too. But I really hope for your sake you do not have it! Keep us informed, please. :)

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MissHaberdasher Apprentice

So sorry to tell you this but that is not the case. I did not feel the slightest bit ill when I ate gluten. When I pigged out on gluten for nearly four months for my gluten challenge I LOVED it. I had been off gluten several months first. In fact, after eight months being strictly gluten free, I sometimes question my celiac diagnosis. Then I remember the positive bloodwork (false positives are rare) and my villi were flattened on biopsy (but sometimes wonder if it is due to something else). Now a few related things make sense - I have fibromyalgia which can certainly be related. It also explains my miscarriages. Plus distant family members also have celiac.

There are others who are virtually asymptomatic, too. But I really hope for your sake you do not have it! Keep us informed, please. :)

Same here. I actually break out in hives and feel "fuzzy brained" but never really have pain. Though I do have gas if I gluten myself.

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zimmer Rookie

I've been through the ringer. But from what I can tell tonight is I don't have celiacs because you are all in so much pain when you get a little glutened and I ate a lot of gluten and I don't feel worse. I still feel "bad" but not worse.

Just for information - not all celiacs have pain. I have celiac disease. I can eat gluten (a "little glutened" like you say above) and my only reaction is to maybe have mild D for a day or so. My 21 yr old daughter also has it and she eats gluten occasionally with little to no reaction. That lack of an obvious, painful reaction does not mean that damage is not being done inside.

I think you've gotten some good, balanced advice here. Please listen to what your body is telling you.

Good luck in your journey to health. :)

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Booghead Contributor

Having some cramping this morning. Along with some gas. Perhaps the rashes I have are also from binging on gluten last night. Going to continue to eat gluten over the weekend and see how much worse I get. If I get worse I will just go saying I have a gluten intolerance and leave it at that. Because I have lost my respect for the GI community as a whole. Maybe my endo will diagnose it if thats what it is. Off to school, happy friday everyone. B)

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frieze Community Regular

Never have had an ANA done. I hear sjogrens can't really be treated so I don't see the point in getting tested for it. But if hashimotos can cause all the eye problems too then it probably is that and not sjogrens.

Had breaded chicken and pizza today. Feeling same as before (not feeling 100% but not feeling overaly sick). My arms have both rashed out. My only other choice is to put vaseline on them so thats what I'm going to do. They hurt so bad.

I am not taking benefibr gluten free or not. I hate it. Its nasty stuff. I think most Celiac Panels are more then 2 but mine was only 2. My mom thinks my thyroid is barely hypo. She thinks 5.79 in a range of 1-4.5 is not that high. So my question is: how high is that really? And I do sweat. But have much less in the past few years, I use to sweat a ton and now its pretty rare. But it does happen in the heat. I do get hot. So I guess I'm not that cold overall.

My GP is very nice. He has only been practicing for 3 years and my hopes are if he doesn't know what to do that he will send me to an endo. Either way I hope I deal with some better doctors. Some doctors who know something.

My GP diagnosed my about 4 months ago with "constipation" like always (this was my first time seeing this doctor). Now my GI has done the same by telling me I need benefiber so I am just hoping my GP won't think just about the constipation. At this moment it is my least troubling symptom. These rashes are the worst. I just hope they start to get better because my appointment isn't for a week and I can't hold out that long with these terrible rashes.

I think I might have to quit showering... I took a colder shower tonight and put lotion on but then the rashes showed up. I didn't use soap this time either.

I've been through the ringer. But from what I can tell tonight is I don't have celiacs because you are all in so much pain when you get a little glutened and I ate a lot of gluten and I don't feel worse. I still feel "bad" but not worse.

You guys make me feel so welcome here. Thanks! Going to try to go to bed. B)

inre: the bold....ask your mother if you can be a "little bit pregnant?"

also, that range on TSH is VERY old. the current one is that it is desirable to be under 2.5. Your mom is in denial that you, her child, is ill. So it is up to you to get the work done, to get better. good luck.

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IrishHeart Veteran

Having some cramping this morning. Along with some gas. Perhaps the rashes I have are also from binging on gluten last night. Going to continue to eat gluten over the weekend and see how much worse I get. If I get worse I will just go saying I have a gluten intolerance and leave it at that. Because I have lost my respect for the GI community as a whole. Maybe my endo will diagnose it if thats what it is. Off to school, happy friday everyone. B)

I'm going to try one more time to summarize we are trying to tell you.

And have your mother read this thread, please!

Some people do not have any gastro symptoms with gluten intolerance.

Some people have rashes, cramping and gas. (dermatological and gastro)

Some people have anxiety, depression, ataxia and insomnia (neurological)

Some people have several autoimmune diseases and do not think they are related (thyroiditis, diabetes, Raynaud's, Sjrogen's, psoriasis) but they are! And for the record, contrary to what you think, these are all TREATABLE, just not curable. Like Celiac.

And just to clarify, a TSH over 3.0 is considered HYPO now (the American Association of Clinical Endocrinologists recommended narrowing the normal reference range for the TSH -- thyroid stimulating hormone -- test to 0.3 - 3 a few years ago. So, you are more than just "slightly hypo."

Some symptoms do not necessarily get worse as we continue to eat gluteny foods.

They just remain constant, causing grief and an ill-feeling and making us wonder if we will ever feel good again in this lifetime.

And some people develop more symptoms in time --as they continue to flood their systems with gluten. And it becomes so bad they think death would be easier.

That is the complexity of gluten intolerance.

No definite set of symptoms. No definite protocol for diagnosis--because so many of us defy the "standard criteria" and that is why we remain ill. The American medical community is hopelessly out of date when it comes to Celiac and gluten sensitivity (Read some articles by Dr. Alessio Fasano.)

This is why we are a nation of people who are ill, in pain and on prescription medications. Rather than figuring out the SOURCE of their patient's problems, they perpetuate them.

You are young. You can stop this right now and have a long, healthy life.

It's your choice, hon.

We're just trying to help, but I think you really want it to be something else causing your issues.

And I don't blame you one bit. ;)

Best wishes to you!... and I sincerely hope you find what's causing your discomfort.

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    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
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      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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