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Are You "self Diagnosed"?


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28 replies to this topic

#1 BrittLoves2Run

 
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Posted 19 January 2012 - 11:32 AM

How many of you out there are ďself diagnosedĒ Celiacís or going gluten-free because you couldnít get a positive results? Iím just curious as Iím waiting for the results of my blood work that was done this morning (and so far nothing has ever come back in MY favor). Iíve decided that even if the blood work comes back fine I will probably do a 3 month gluten-free test. This is the first thing in the years of sickness that actually makes sense.

Also, everyone woman on my momís side of the family has underactive thyroid, which I was also tested for today. Iíve been reading that sometimes there are correlations between thyroid problems, and Celiac. My mom has been on synthroid for years in the past few weeks of researching Celiac, I think she could have it too.
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--Brittany
Dxed with IBS in 2010

Celiac Panel/Thyroid blood test done on 1/19/2012
1/23- Positive Celiac blood tests/ TSH Levels 4.5 (range 0.4-5.5)
1/24- Gluten free
3/14--Since being gluten free i've had NO nausea, joint pain, and finally I am not tired all the time!! I am starting to feel like a normal person again!!!
5/30- Just a little over 4 months of being gluten free. While the joint pain and nausea are gone, I'm very sluggish and tired again. I also for the first time in my life have to get up to pee in the middle of the night. Quite annoying. But I'm still very grateful most of my issues are gone!

6th half marathon completed on 5/6/2012

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#2 pricklypear1971

 
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Posted 19 January 2012 - 11:56 AM

I'm not self dx'ed (it's complicated), but I haven't had testing.

Anyhow, the reason my ND suggested a gluten-free trial was because I have Hashimotos which is a THYROID disease.

Have any of those lovely ladies in your family had a TPO test to see of they have Hashimotos Thyroiditis?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

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

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

#3 Celtic Queen

 
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Posted 19 January 2012 - 12:12 PM

I'm sort of self-diagnosed. I tested positive on the bloodwork but negative on the biopsy. But my biopsy was flawed because I hadn't been eating gluten 6 weeks prior (and because my doctor was an arrogant twit...but that's a whole other story). My GI said I wasn't a Celiac because of the biopsy & coloscopy, but I say I am because of my bloodwork and the positive reponse to the diet.

I think your idea about trying the diet sounds great. What do you have to lose? If it doesn't work, it's not like you've spent a lot of money on drugs or doctors. But you'll probably be surprised by how much better you feel without gluten. There were a ton of crazy little things wrong with me that I had no idea were related to the gluten until I started the diet.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#4 mushroom

 
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Posted 19 January 2012 - 12:22 PM

I am self-diagnosed, in fact, I am totally untested. Didn't know anything about celiac, no one suggested it (the usual IBS and fibromyalgia BS -- as well as the "it's all in your head" diagnoses). And I sure as heck wasn't going back there when the diet worked for my GI symptoms. However, I started the diet not for the GI (or IBS :P ) symptoms, but because I hoped it would help my rheumatoid arthritis symptoms which later became psoriatic arthritis, an autoimmune disease positively linked with celiac. I am also hypothyroid which accounts for why I was always cold.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 BrittLoves2Run

 
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Posted 19 January 2012 - 12:28 PM

I'm not self dx'ed (it's complicated), but I haven't had testing.

Anyhow, the reason my ND suggested a gluten-free trial was because I have Hashimotos which is a THYROID disease.

Have any of those lovely ladies in your family had a TPO test to see of they have Hashimotos Thyroiditis?


I'm not sure.. is there a separate test you have to do to see if it's Hashimoto's? I could ask her.

I'm sort of self-diagnosed. I tested positive on the bloodwork but negative on the biopsy. But my biopsy was flawed because I hadn't been eating gluten 6 weeks prior (and because my doctor was an arrogant twit...but that's a whole other story). My GI said I wasn't a Celiac because of the biopsy & coloscopy, but I say I am because of my bloodwork and the positive reponse to the diet.

I think your idea about trying the diet sounds great. What do you have to lose? If it doesn't work, it's not like you've spent a lot of money on drugs or doctors. But you'll probably be surprised by how much better you feel without gluten. There were a ton of crazy little things wrong with me that I had no idea were related to the gluten until I started the diet.


yeah.. I don't see how I could do any harm in trying (after I know all testing is done) I have so many issues. I really hope this could be what makes them go away.

I am self-diagnosed, in fact, I am totally untested. Didn't know anything about celiac, no one suggested it (the usual IBS and fibromyalgia BS -- as well as the "it's all in your head" diagnoses). And I sure as heck wasn't going back there when the diet worked for my GI symptoms. However, I started the diet not for the GI (or IBS :P ) symptoms, but because I hoped it would help my rheumatoid arthritis symptoms which later became psoriatic arthritis, an autoimmune disease positively linked with celiac. I am also hypothyroid which accounts for why I was always cold.



Did the diet help? I have SO many problems with my joints aching. I've been tested for RA, Lupus and Lyme's and they came back fine. I do have a Rheumy appointment at the end of the month.. i've also had an appointment with a Neurologist who wants to do a nerve study and an MRI. My doctor doesn't think Celiac "even possible" but I was diagnosed with IBS in 2010. Arg. Just so frustrating.
  • 0
--Brittany
Dxed with IBS in 2010

Celiac Panel/Thyroid blood test done on 1/19/2012
1/23- Positive Celiac blood tests/ TSH Levels 4.5 (range 0.4-5.5)
1/24- Gluten free
3/14--Since being gluten free i've had NO nausea, joint pain, and finally I am not tired all the time!! I am starting to feel like a normal person again!!!
5/30- Just a little over 4 months of being gluten free. While the joint pain and nausea are gone, I'm very sluggish and tired again. I also for the first time in my life have to get up to pee in the middle of the night. Quite annoying. But I'm still very grateful most of my issues are gone!

6th half marathon completed on 5/6/2012

#6 pricklypear1971

 
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Posted 19 January 2012 - 12:50 PM

Yes, it's called a TPO antibody test for Hashimotos.

If its +, its a strong link to Celiac.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

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

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

#7 mushroom

 
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Posted 19 January 2012 - 01:11 PM

Did the diet help? I have SO many problems with my joints aching. I've been tested for RA, Lupus and Lyme's and they came back fine. I do have a Rheumy appointment at the end of the month.. i've also had an appointment with a Neurologist who wants to do a nerve study and an MRI. My doctor doesn't think Celiac "even possible" but I was diagnosed with IBS in 2010. Arg. Just so frustrating.


Unfortunately, the diet has not relieved my psoriatic arthritis, for which I now take Humira injections. However, I have been able to avert any joint injuries and I think getting rid of the gluten has helped that. Incidentally, I tested negative for rheumatoid factor. After going gluten free I discovered all lthe other foods I did not tolerate in addition to gluten (although I already knew about the lactose and the corn), especially soy. I dropped nightshades to a low level because of the arthritis (they are pro-inflammmatory) and then discovered that I was intolerant of them too - gave me hives.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 Skylark

 
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Posted 19 January 2012 - 01:31 PM

Untested here. I found out I couldn't eat wheat or rye on an elimination diet and figured out the problem was gluten. It was well before the research showing celiac is common in the US and I didn't know a thing about the testing. I didn't happen to say anything to my Dr. until four months after I'd stopped eating gluten. My Dr. said I was likely celiac because of all the stuff that resolved gluten-free. He gave me the option to challenge and get an anti-EMA test but I only made it through one sandwich. :lol:

I have Hashimoto's. One kind of autoimmunity makes it more likely I have celiac because of how autoimmune diseases cluster.
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#9 Kansas

 
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Posted 19 January 2012 - 01:58 PM

I am untested as well. Numerous doctors and specialists tested me for so many things, started losing over a pound a day, neighbor kept telling me to try the diet because her husband is gluten intolerant, I didn't have any of his symptoms. Surgery doc (that was going to perform endoscope) told me to drink Ensure, of course she didn't do any testing for gluten intolerance while she was there(???), but that was the beginnning to my recovery. If you do the diet, you might also want to stop dairy and soy as well, it took me a long time to figure out that dairy was just about as bad as gluten.
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#10 jmrogers31

 
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Posted 19 January 2012 - 01:59 PM

I don't consider myself a Celiac but gluten intolerant for this reason. I was having so many issues with headaches, anemia, stomach aches, gas, bloating, constipation, asthma, environmental allergies, sinus issues including surgeries for pollups, and anxiety. My doctor tried antibiotics, iron supplements, multivitamins, decongestants, etc with no improvements and one day she said to try a gluten free diet for a month. Within 2 weeks I knew this was the cause as my anxiety disappeared as well as all my digestive issues and headaches. Still healing and am hoping the anemia, allergies, and asthma resolves. I asked her a month later if I should be tested and she said why bother if you feel better? I thought about it and agreed.
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#11 newlifeforme

 
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Posted 19 January 2012 - 04:19 PM

Self diagnosed. And very proud of it!
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#12 beebs

 
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Posted 19 January 2012 - 07:11 PM

I suppose I am self diagnosed- in that I don't have a formal diagnosis -(I haven't had an endo) having said that all my drs and specialists agree that I am coelaic - there is just no way I'm not. Because I haven't had a biopsy - I always have this about 10% doubt, I'm 90% sure I'm coeliac - but what if I'm not? What if its something else and I'm gluten free for no reason - blah blah blah!
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HLA DQ8, gluten-free since January 2011

#13 beebs

 
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Posted 19 January 2012 - 07:13 PM

My joint issues (which are deffo autoimmune) have so far not resolved on a gluten-free diet - its been a year and they just get worse and worse :( So bad, cause I sort of assumed they would after reading so many success stories here! Doh!
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HLA DQ8, gluten-free since January 2011

#14 mushroom

 
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Posted 19 January 2012 - 07:27 PM

My joint issues (which are deffo autoimmune) have so far not resolved on a gluten-free diet - its been a year and they just get worse and worse :( So bad, cause I sort of assumed they would after reading so many success stories here! Doh!


Try not to feel too bad. It doesn't always work for all of us all the way :rolleyes: Just be thankful for what it has done for you. :) Sometimes we do have to have treatment for the secondary autoimmune diseases that have hitched a ride on the gluten boat.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#15 researchmomma

 
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Posted 19 January 2012 - 09:08 PM

How many of you out there are “self diagnosed” Celiac’s or going gluten-free because you couldn’t get a positive results? I’m just curious as I’m waiting for the results of my blood work that was done this morning (and so far nothing has ever come back in MY favor). I’ve decided that even if the blood work comes back fine I will probably do a 3 month gluten-free test. This is the first thing in the years of sickness that actually makes sense.

Also, everyone woman on my mom’s side of the family has underactive thyroid, which I was also tested for today. I’ve been reading that sometimes there are correlations between thyroid problems, and Celiac. My mom has been on synthroid for years in the past few weeks of researching Celiac, I think she could have it too.


My daughter has a long list of symptoms including occipital seizures. She tested negative. However, I was encouraged by what I read about gluten symptoms and a few forum members here suggested that we try the gluten free diet. We have seen amazing changes. We are still in the early stages of eating gluten free but even my skeptic husband is in shock over the positive changes in my daughter. Her anxiety seems lessened as does her cranky attitude. In addition, she is eating again. Before she went gluten-free, she would eat two bites and say her stomach hurt. She is short in stature. We are hoping for some growth in the next few months.

My family also has some pretty amazing history like pernicious anemia, duodenal cancer, Grave's disease (thyroid disorder), osteoporosis and parathyroid tumors. Doctors and tests can be wrong. Or they can be right.... perhaps my daughter doesn't have Celiac but maybe gluten intolerance. We know it is real while they still debate its existence. When will they get it?

So, if your tests are negative, give gluten the boot for 3 months and try it out. It has been a pretty amazing road for us so far!
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