Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

For Everyone Who Is A "self-diagnosed" Celiac...


  • Please log in to reply

34 replies to this topic

#16 GFPamela

 
GFPamela

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 25 August 2009 - 06:31 PM

[quote name='tarnalberry' date='Aug 25 2009, 12:38 PM' post='557413']
I actually do simply say "I'm gluten intolerant." If I get questions on that (and often I don't), and they specifically want to know if it's celiac disease (or - they're probably thinking - some fad), I simply state "My blood tests were inconclusive and I never had a biopsy.

I see my older sister getting very good care because she is diagnosed. I asked for screening for osteoporosis (I'm 56) and was firmly told they don't screen until you're 65. Now I'm looking for a diagnosis. For now, "I'm gluten intolerant" is helpful, but because of the long list of health issues that are associated I think I need to know for sure, if that's possible.
  • 0

Celiac.com Sponsor:

#17 Takala

 
Takala

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,555 posts
 

Posted 25 August 2009 - 08:08 PM

I don't refer to myself as a self diagnosed celiac but as gluten intolerant. It is only here that I discuss about being self diagnosed. To any medical people I deal with, I just say I am gluten intolerant so any medications have to be gluten free and let them deal with the consequences, if they would ask why I think that, I point out that a brain scan showed "bright spots" and after over 6 years (hey, I'm approaching the 7 year anniversary....) of my stopping gluten consumption all my neurological symptoms have nearly gone away and I'm not using a cane ... my eyes stopped crossing, I can see somewhat at night instead of being nightblind and partially color blind in one eye, I have no more chronic kidney infections and my arthritis stopped getting worse. I can touch type, something I learned to do in my late forties, which I never thought I'd get the coordination for, and I can write somewhat coherently. I leave out the part about the idiotic neurologist running every test she could get reimbursed for, and pronouncing me a head case after this test showed a reason for the neuro problems, because the the second you say a doctor didn't agree with something they are trained to blow you off and not the doctor.

I really don't have any desire to eat gluten at all so I don't feel like I need a medical diagnosis at this point, unless I started showing lyme disease symptoms.

How I came to this, I was doing internet research on possible causes of MS and noticed that some alternative meds type people were doing gluten free diets and getting symptom relief. Many auto immune diseases are related, and celiac is was listed in this group of stuff I already had. I also match in just one body, many of the ethnic groups that have higher incidences of being prone to celiac/gluten intolerant. I had the symptoms in addition to having the arthritis, but my spinal fluid test did not come out positive. I also noticed that one of the spondy boards has a SCD diet section but they insist on calling it a no starch diet, and then some do well on a low starch diet, and it's basically a gluten free diet that is also very low carb except for fruits and vegetables.... if you are avoiding starch in all forms you are accidently avoiding most gluten. I really feel that if that board didn't have such difficult moderators they'd have many more people having much more success with the low starch and no starch diets, as a lot of them don't know to avoid trace gluten. They have the board divided into sections and the moderators in each section are very hostile if one cross posts in the wrong section, and the no starch people just will NOT refer to this as a type of gluten free diet and insist it's not a version of celiac/gluten intolerant.

I responded very dramatically to changing my diet. Current doctor accepts this, past doctors have not. (short version)

I'm obviously so different off the gluten that this is a no brainer that I should not be eating it, every day I'm just thrilled that I can actually make myself feel differently by what I eat. I mention gluten intolerance and celiac in other internet venues to spread knowledge. The more regular everyday people know about this, the more likely we can shape the responses of the medical profession when presented with these mysterious symptoms, and if that doesn't work, the more likely we can get people to push for blood tests, biopsies, x rays, scans (it's a trip to be told your brain has holes in it over the phone <_< ) genetic testing, responses to diet challenges and food trial eliminations, what ever it takes to get the celiac and gluten intolerant person into a healthier, gluten free eating lifestyle.

If some of the celiacs want to insist I'm not "one of them," all I can think is "whatever" and I'm not going to get into a crisis over it as long as they realize we are going to be also not eating gluten no matter what. If they want to be gluten intolerant I will share.... I don't know if they would want to trade symptoms if they could have a trial run.
  • 0

#18 nu_to_no_glu

 
nu_to_no_glu

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 91 posts
 

Posted 26 August 2009 - 03:15 AM

I'm not as knowledgeable as all of you, but this topic brought up a question that I haven't found an answer to yet...can gluten intolerance have a genetic effect on family members, like celiac can? Or is it only celiac that seems to run in families? I'm curious bc I'm trying to get myself and son diagnosed and would like to know if it could be gluten intolerance, and not specifically celiac? Great post, by the way! I've been converted through all of this to believe that so many people are negatively effected healthwise by the evolution of our food sources and the amount of "crap" that is in processed foods. It's not surprising that more and more people are intolerant to it!
  • 0

#19 darlindeb25

 
darlindeb25

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 2,324 posts
 

Posted 26 August 2009 - 04:12 AM

can gluten intolerance have a genetic effect on family members, like celiac can? Or is it only celiac that seems to run in families?


Celiac is only a small part of gluten intolerance. Gluten intolerance absolutely runs in families. My sister is a diagnosed celiac, our dad and I are gluten intolerant. I have a daughter who is gluten intolerant, she just hasn's fully accepted it, I also have 2 sons who may be.

At a recent support meeting, we had a husband and wife sign up as members, I asked who is the gluten intolerant person, he says, I am, she says, I am, and all four of our children are. A family of 6, all gluten intolerant.
  • 0
Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#20 glutenmommy

 
glutenmommy

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts
 

Posted 26 August 2009 - 08:08 AM

Thanks to everyone for your thoughtful replies to my post so far. I always learn so much on this board! I can see that many people are already thinking about this issue. I am not diagnosed with celiac (nor do I think I actually have it based on most of my labwork) but I can tell you that I feel absolutely horrible when I eat gluten. Bloating, gas, edema, mental fog, loss of balance, etc. Fortunately for me (I think!) I don't get immediate symptoms when I've been glutened, so if I slip or accidentally ingest a small amount it's no big deal. However, if I eat normal amounts over a period of a day or two, all of the symptoms begin to build up to a point where I start to feel lousy again. I wish these boards had a section for non-celiac gluten intolerants, but then considering this is celiac.com I suppose they don't want to branch out into other areas. Celiac or not, this board is by far the most helpful place on the web.

:)
  • 0

#21 momxyz

 
momxyz

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 309 posts
 

Posted 26 August 2009 - 12:59 PM

I think its entirely possible that non celiac gluten intolerance can have a genetic basis... my circumstantial evidence would be my issues, my daughter's problems... and she has two first cousins that have problems that could be related to gluten. (One of the cousins has experienced relief by avoiding gluten.)
  • 0

#22 ang1e0251

 
ang1e0251

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,764 posts
 

Posted 26 August 2009 - 01:19 PM

I refer to myself as celiac. I wouldn't mind if it were intolerance as long as I feel better. The reason I finally found out is because of the rashes. I'm not prone to skin problems or sensitive to label in clothing or soaps. But suddenly I was miserable with a rash that was getting more serious as time went on. I actually had been having another rash on and off for a year or so but I thought it was bug bites. I kept tearing my bed apart looking for bed bugs I was sure DH was bringing home from business trips!

When I read it could be a sign of celiac disease, I started the diet immediately. My rash slowly healed and it doesn't come back unless I am badly glutened.

I personally think that GI is just a degree of celiac disease. I guess I really don't think that someone who is GI is really immune to damage to their body. It seems to me that they just haven't reached complete meltdown damage at this point. I am no dr so this is just my guess. I think if you're feeling crappy and going gluten-free helps, I don't care if you call it celiac disease, GI or Purple People Eater Syndrome, I'm just glad you found answers!
  • 0

#23 darlindeb25

 
darlindeb25

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 2,324 posts
 

Posted 26 August 2009 - 05:41 PM

From "Healthier Without Wheat"

So what is the difference bwtween celiac disease and non-celiac forms of gluten intolerance? Celiac disease is defined by villous atrophy, a very specific type of damage to the small intestine. If you do not have villous atrophy, then you are not celiac. Celiac disease is not defined by villous, atrophy, it IS villous atrophy.

However, many potential probems can result from a gluten intolerance. Villous atrophy is one one of these; therefore, celiac disease is only one form of gluten intolerance among many. Celiac disease does not emcompass or define gluten intolerance.

People often mistakenly assume that celiac disease is the worst form of gluten intolerance and that if you don't have celiac disease, then you don't really have to worry about gluten as much as you would if you had been diagnosed with celiac disease. This idea unfortunately is perpetuated by the medical communtiy, but it is also inherent in the use of the word disease. Celiac is not a disease in the popular sense of the word. It is not a bacteria or a virus, not is it contagious. It is simply a food reaction.

You may have terrible diarrhea triggered by gluten, yet not have celiac disease. Your child may experience poor growth or poor attention span caused by a gluten intolerance, yet not have celiac. You may be chronically anemic (iron deficient) yet not have celiac disease. The list goes on and on.

The symptoms that one person with a non-celiac gluten intolerance experiences may be much worse than those of another person with celiac disease. Or, it may be the other way around.

Recent studies estimate that non-celiac forms of gluten intolerance are approcimately 30 times more common that celiac disease and may affect 15% of the world's population, where celiac affects 1%.


I have always said, non-celiac gluten intolerant people may be much sicker than a diagnosed celiac. I know I have many more issues than a lot of the celiac's I read about in these forums. I have many more issues than my own sister whom is a diagnosed celiac, and our father whom is gluten intolerant.

Just because you are not diagnosed, do not ever think you aren't just as important as any one else. Gluten intolerant people have just as many issues with gluten, as do celiac's. Gluten intolerance is the same for both, celiac is just a different type of the gluten intolerance spectrum.

I have auto-immune neuropathy caused by a gluten intolerance.

Find this book, read it, you will learn so much from this doctor. He is one of us, who better to learn from?
  • 0
Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#24 momxyz

 
momxyz

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 309 posts
 

Posted 26 August 2009 - 06:09 PM

I refer to myself as celiac. I wouldn't mind if it were intolerance as long as I feel better. The reason I finally found out is because of the rashes. I'm not prone to skin problems or sensitive to label in clothing or soaps. But suddenly I was miserable with a rash that was getting more serious as time went on. I actually had been having another rash on and off for a year or so but I thought it was bug bites. I kept tearing my bed apart looking for bed bugs I was sure DH was bringing home from business trips!

When I read it could be a sign of celiac disease, I started the diet immediately. My rash slowly healed and it doesn't come back unless I am badly glutened.

I personally think that GI is just a degree of celiac disease. I guess I really don't think that someone who is GI is really immune to damage to their body. It seems to me that they just haven't reached complete meltdown damage at this point. I am no dr so this is just my guess. I think if you're feeling crappy and going gluten-free helps, I don't care if you call it celiac disease, GI or Purple People Eater Syndrome, I'm just glad you found answers!


hi there, we are the same age and I am curious. Your reply indicates that your presenting symptom was the rash? That mirrors my experience. I have been dealing with a rsah/dermatitis since Oct 08. i have not sought treatment for it - it's been a bad year financially for us - and I would never have connected it to celiac or GI, if it weren't for my daughter's symptoms and past history.... in the last month I "connected the dots".

We are now doing our best to stay gluten free, and my rash has started to heal. I have had no pronounced gastrointestinal symptom, but the rash is getting better and better as I continue to eliminate gluten. Did you ever seek specific dx, or just dealt with it on your own? Pm me if you want.
  • 0

#25 Kohdi

 
Kohdi

    New Community Member

  • Members
  • Pip
  • 1 posts
 

Posted 26 August 2009 - 07:01 PM

I dont know if I am celiac or not yet, I have been gluten free for about 6 months and after another 6 months I have been advised by a doctor to try going back onto gluten as they think my intolerance could be a direct consequence of a bad accident I had last year. However I don't think I will be able to tolerate gluten again, but then fingers crossed!
My symptoms are severe nausea, stomach cramping and bowel "issues".
I went to the doctor many times and she didn't once suggest gluten intolerance, and when she went off to have a baby I was put on to another doctor who immediatly suggested gluten was the problem and sent me to a specialist. Being gluten free has made all the difference. I am hoping that I'm not celiac, because of the health problems you can get when you are older, but I tell my friends I'm celiac because they have a few friends who are celiacs and it just makes it easier to explain. Plus if you tell them you can get bowel cancer from eating gluten they are very careful about what they feed you! :D ;) :P B)

Hehe I like the sound of Purple People Eater syndrome I might start calling it that!
  • 0

#26 lynnhopes

 
lynnhopes

    New Community Member

  • Members
  • Pip
  • 8 posts
 

Posted 29 August 2009 - 04:47 PM

If lay people and the medical community really understood the difference between gluten intolerance and celiac disease I would tell them I am gluten intolerant. However, people think intolerance means you can have the item now and again. When I say celiac on the other hand, people listen to me and respect my dietary needs.

My bloods never showed an issue. I later found out that since I was eating a very low carb diet, they were not accurate. So, I had the enterolab tests done and I have one celiac gene as well as one gluten sensitive gene. I also showed mild malabsorption and elevated antibodies. As well as that I have Hashimotos thyroiditis so the chances of me having celiac are higher than the normal population.

Since I went gluten-free I have lost 8.5lbs and digestive issues have cleared up.

I could do a gluten challenge to get an "official" diagnosis but I don't want to go through that pain. I am looking forward to the day Kenneth Fine's work is validated and I can be officially diagnosed by that.
  • 0
Enterolab results:

Fecal Anti-gliadin IgA: 102 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA: 45 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score: 313 Units (Normal Range is less than 300 Units)

HLA-DQB1 Molecular analysis, Allele 1: 0302

HLA-DQB1 Molecular analysis, Allele 2: 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

#27 CarolO

 
CarolO

    New Community Member

  • Members
  • Pip
  • 3 posts
 

Posted 30 August 2009 - 06:02 AM

I recently underwent every test for celiac disease and all test came back negative. The doctor has dx. me with gluten intolerence. I told the doctor that being dx. with "celiac disease" did not make a difference. I know now after going gluten free that that has been my problem all along. Whether I am dx. with celiac disease or gluten intolerance to me is basically the same treatment----- NO GLUTEN for me. Also after going gluten free I have also become lactose intorante. But will try and re-introduce lactose in a few months, but slowly.
Also, I have epilepsy for the last 22 years and at first going gluten free my seizure activity was MUCH less, but now after about 4 months being gluten free the seizures are back.



...I'm just wondering, after reading Dr. Stephen Wangen's book Healthier Without Wheat, how you all arrived at the diagnosis of celiac. Celiac disease is a very specific subset of a larger intolerance known as Gluten Intolerance. Celiac is only diagnosed when you have villous atrophy; however many more millions of people have Non-celiac Gluten Intolerance which can produce symptoms that feel just as debilitating as celiac. In other words, being gluten-intolerant is completely possible without having celiac disease. I'm not trying to split hairs, just wondering how you all arrived so definitively at your diagnosis of celiac. Only 1% of the population has celiac disease while an estimated 20-30% have non-celiac gluten intolerance.

By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.

I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.

Just thinking outloud....


  • 0

#28 Mskedi

 
Mskedi

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 197 posts
 

Posted 30 August 2009 - 06:46 AM

So far I've only called myself "gluten intolerant" because I clearly am. That said, I suspect Celiac because it runs in my family.
  • 0

#29 RiceGuy

 
RiceGuy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,520 posts
 

Posted 30 August 2009 - 08:29 AM

I do not know which I am, celiac or gluten-intolerant, and it really makes not one whit of difference to me.

My short-form history is that I first became lactose intolerant...[snip]

As I understand it, lactose intolerance occurs in Celiac because the antibodies begin to destroy the villi. And apparently, it is the tips of the villi which are responsible for producing the lactase enzyme, to digest lactose.

It is for this reason, that I suspect many people who think they are "only" lactose intolerant, actually have Celiac. Or at the very least, are gluten intolerant. But again, if the villi are being damaged, that suggests Celiac to me.

The question is not whether or not the antibodies are produced, but whether or not they can be detected in the blood stream. They certainly are produced and lead to the atrophy, *but* one theory is that there is not enough damage, enough intestinal permeability, for the antibodies to make it through the usually tight intestinal wall to the blood stream until there is significant damage. I certainly don't have an answer.

Perhaps I'm incorrect, but I have always believed that the antibodies are released into the bloodstream, and from there, they reach the intestines. I don't believe they are produced in the intestines, just that the small intestine is the area where the damage is known to occur (although from the range of symptoms people report, I think there is clearly damage going on in other areas of the body).

Doing a bit of searching, I located this article about the immune system. It is quite fascinating and informative.
  • 0
A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#30 RiceGuy

 
RiceGuy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,520 posts
 

Posted 30 August 2009 - 09:07 AM

Also, I have epilepsy for the last 22 years and at first going gluten free my seizure activity was MUCH less, but now after about 4 months being gluten free the seizures are back.

It is a very curious thing - how so many find certain symptoms intensify after going gluten-free. I have found, that the symptoms that got worse for me, were due to nutrient deficiencies. Even though my diet is nutrient-rich, it seems those nutrients just don't get absorbed as well as they should. One would think that absorption would be improved since going gluten-free, and thus how could symptoms worsen, or new ones appear? I don't know, but I have found that taking certain supplements to be absolutely vital.

This is just a guess based on the research I've done, but my first thought for epilepsy, would be to take minerals including magnesium, zinc, potassium, manganese, calcium, etc, and vitamins including methylcobalamin (a type of B12), co-enzyme B-complex, vitamins A, C, and E, and vitamin D3. Some other things which may help are Omega-3s, Biotin, L-Tyrosine, Acetyl-L-Carnitine, Vinpocetine, Co-enzyme Q-10, Taurine, Phosphatidylserine, Phosphatidylcholine, Inositol Hexanicotinate, Pyridoxine HCL, Gotu Kola, and Ginkgo Biloba.

Avoid those cheap multivitamins at the drug store. They're mostly useless. You want highly bio-available, high potency supplements. Here's an article about magnesium which you may find interesting: http://www.calmnatur...iraclemagnesium
  • 0
A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: