Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Possible Celic


jdog

Recommended Posts

jdog Newbie

For years I have had health problems and doctors seemed stumped.

I asked for a celiac test once and was denied. Here are the symptoms

Gerd Medication does not work.

Lots of zantac works.

low bone density.

buring in throat, gaging

headaches and muscle tension

large amounts of vitman c ang magnesioum help

massive bloating

light diet helps

cannot stomach beer anymore

bone spur in my foot

zytec helps stomach cannot explain

sinus infections, uet sinus look fine

cannot stomach motrin any longer

alka selzer seems to help alittle

mild anxiety

left side abdominal aches

ct scan showed nothing in abdomon

stomach scope showed mild bloating and some scarring, nothing serious

they keep thinking I have an ulcer but nothing shows up.

melthyprednisone helps

celebrex helps.

irregular stool, need alot alot of fiber to normal ize,

any thoughs....could I be off or is a celiac test worth it at this pain...tired of tummy pain and fatigue.

thanks in advanncde

jdog


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jdog Newbie

Also was diagnosed with oral thrush once or twice. A doctor who never saw it said they were wrong and it was GERD....Can celics get oral thrush. Seems strange since I rarely get even flus, just sore throats that burn, tongue sometimes too.

Jnkmnky Collaborator

Are you in the U.S.? How can they deny you a test you request? It doesn't matter, I guess.... Nowadays, the tests are even better and more reliable. Get the blood test now. I recommend Prometheus Labs. They'll send you a kit, you bring it to your dr. Your dr draws blood and sends it off to Prometheus Labs. Your dr actually does very little. :) Leave it to the "professionals! :lol: You'll get your results in about 2 weeks. Request the whole work-up. It will look for gluten sensivities as well as celiac disease. Very good lab. Do not start the gluten free diet until your've had your blood drawn. While you wait on everything, you can familiarize yourself with the diet....which is not as big, bad, and scary as those not on it will tell you it is! It's actually very easy. Not deprivation-like, either.

nettiebeads Apprentice
For years I have had health problems and doctors seemed stumped.

I asked for a celiac test once and was denied.  Here are the symptoms

Gerd Medication does not work.

Lots of zantac works.

low bone density.

buring in throat, gaging

headaches and muscle tension

large amounts of vitman c ang magnesioum help

massive bloating

light diet helps

cannot stomach beer anymore

bone spur in my foot

zytec helps stomach cannot explain

sinus infections, uet sinus look fine

cannot stomach motrin any longer

alka selzer seems to help alittle

mild anxiety

left side abdominal aches

ct scan showed nothing in abdomon

stomach scope showed mild bloating and some scarring, nothing serious

they keep thinking I have an ulcer but nothing shows up.

melthyprednisone helps

celebrex helps.

irregular stool, need alot alot of fiber to normal ize,

any thoughs....could I be off or is a celiac test worth it at this pain...tired of tummy pain and fatigue.

thanks in advanncde

jdog

<{POST_SNAPBACK}>

K, here's what I think -celiac disease is a possibility, or at least gluten intolerance or wheat allergy. Why was the celiac test denied? What test - blood work, gene, or biopsy?

Where are you? do you have health insurance? It's not like the Dr. pays for the test. That part always ticks me off. If you ask for something, drs act like you may know more than them. For some drs, anytime they may have to step outside of their comfort zone, they get real defensive.

Okay, here's what I can think about some of your symptoms -

Low bone density - malabsorption that could be caused by celiac disease.

burning in throat - acid reflux caused by malaborpsion. (I still get a little acid reflux every now and then)

light diet helps because your intestines are damaged, possibly from celiac disease.

beer problems - it's from wheat, can't have it if you do indeed have celiac disease.

Some other posters have had congestion and sinus problems that cleared up after going gluten-free.

anxiety and fatigue are symptoms of celiac disease

It looks like some of the stuff you take will help alleviate the symptoms short term but lose their effectiveness long term. And repeated doses of NSAIDS long term will cause ulcers (I know first hand - different story not related to celiac disease) or at least gastrointestinal distress. And of course steroids will reduce any inflammation, no matter what the cause.

Which begs the question - do dr(s) want to know the cause or are just the symptoms been addressed? How long have you had these symptoms? your age? ethnic background (northern europeans seem to have more problems w/wheat. Me -1/2 swede) Have you had a major stressor (college, divorce?) recently?

Have you tried the gluten-free diet? Can you change dr's? can you get a referral to a gi?

Where do you live? Near a major health center? Let me/us know so we can get you on the right track. We care, we've all been there and know that celiac disease is a frustrating, but easily treatable disease. Which is another gripe of mine - dr's are comfortable with anything they can prescribe for, but if it involves nutrition, then they are at a loss, so obviously it's all in your head. Makes sense right? Sorry to get on my soap box with your problems, I'll get off now so we can focus on getting you better.

Annette

Jnkmnky Collaborator

Which begs the question - do dr(s) want to know the cause or are just the symptoms been addressed?

Oh, you are so right. <_<

RiceGuy Collaborator

Yes, I agree that gluten intolerance/celiac disease could be a problem for you (those are two different things really).

Now, drawing from my own experience, it could also be a yeast problem, especially considering the thrush. Do a search here on the forum for "Caprylic Acid". You will find my posts on it. Then Google for that and something called "acidophilus". If you can relate what you learn to your own case, then I'd follow up on it. That's something which is as safe to try as going gluten-free. Might just be the ticket.

Hope you find the answers you need, and as stated, we do care, we've been there (many still are), and we want to help. No motives like money blinding our way either :)

jdog Newbie

RIght now it's just treatment, Celebrex, skelaxin seems to help with the headaches, zantac was a chance discover that helps with both the stomach and head,, they have forced presciptions on me for years on every GErD medicine out there and it just gets worse, the zantac is the only thing that works but itis losing its effect.

I just dumped my old primary care, he never really listened to a word I said. I have a new one, I live in Los Angeles but I am taking time off in NH where I was raised, seeing a family doctor here now, he seems good so far.

I don't know why they denied the celiac disease test, seems like every time I asked for a test they would deny it only for me to jump doctors till I got it and I was right, They keep telling me the headaches were from the sinus, brow beat me into two sinus surgery that just made them worse. I finally got a head and neck MRI and there was a lot of joint inflammation. They don't know why but its there and when it's down the headaches do better. Why zantac would help with that is beyond me or the doctor's understanding.

I noticed alot of celiac people seem to have neuropathy issues with no real source until celiac has beed looked at. My father also had many simptions similar to mine when he was a kid and he was never tested, but celiac disease does run in the family. he now had neuropahy and doesn't know why. There is no family hisotry of that.

I don't know, hope this isn't too much information I'm just tired of my gut feeling crappy and this seems the only think I havnt' looked at.

can I just demand the test from teh doctor to either know or rule it ourt?

Thanks for you r quick response.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jdog Newbie

What is the difference between celiac disease and an intolerance?

Is one just harsher than the other?

I've heard of the yeast thing and the acidipous (however its spelled) are they related.

I've tried the stuff, it helped only a little.

One doctor thought the thrush was misdagnosed so I 'm not really sure what it was or why. It doesn't happen often.

jdog Newbie

Also can it be GERD if PPI's don't help...only h2 blockers....maybe post nasel drip??

Jnkmnky Collaborator

Wait. celiac disease and gluten intolerance are the same thing. Right? Also, I'm confused.. did you say you have been tested and were positive for celiac disease?

I don't know why they denied the celiac disease test, seems like every time I asked for a test they would deny it only for me to jump doctors till I got it and I was right, They keep telling me the headaches were from the sinus, brow beat me into two sinus surgery that just made them worse. I finally got a head and neck MRI and there was a lot of joint inflammation. They don't know why but its there and when it's down the headaches do better. Why zantac would help with that is beyond me or the doctor's understanding

Are you eating gluten free now? Are you dxed with celiac disease? Brain fog is a definite component of celiac disease.

jdog Newbie

Sorry about that,

I had headaches due to something in my neck that showed up in an MRI, The said no and pushed for sinus surgery. When it failed I got my own and it showed strange muscle spams in the head and neck that the doctors couldn't expain but are treating. I also have been wanting a celiac disease test and have been denied that, I'm pretty sure I am one and think the joint problem in my neck might in some weird way be related. as well as the burn in my throat.

To answer your question , no I havn't been tested. But I avoid pasta like foods and beer since I have trouble digesting it, didn't start till about five years ago. Certain breads seem ok. Could just be a coincidence,

witout 6-900mg of zantac a day I never really feel hungry just weak and that is how I know I should eat. with the zantac I'm not only hungry but lose weight without trying. Strange?

RiceGuy Collaborator

OK, Here's what I think, and I feel very strongly about this opinion. Believe me, I know what it's like to have strange symptoms that doctors have no clue about, yet prescribe crap for anyway.

First, gluten intolerance is the cause of celiac disease, which is the damaged condition of the small intestine. The intolerance is the immune system response, which cause the damage. That's what I have gathered from the info I've read. If I'm wrong someone should jump in and say so.

Now for my take on your problems:

In a nutshell, your doctors are clueless. The drugs are just drugs, not cures and not addressing the actual problems. I think they are likely making the problems worse. If it were me (and I've been in that situation), I'd dump the docs and the drugs, go COMPLETELY gluten-free, sugar-free, yeast-free. Get the Caprylic Acid and maybe the Acidophilus too. DO NOT under ANY circumstances go off the diet even once. Not for a single bite.

Continue this for three or four weeks at least. Keep a diary and mark any and all changes, even subtle ones. Note your mood each day too. Look in the mirror at least twice daily - morning and eavening, but not just before you go to sleep because you will be more tired and might not be appearing as good as a few hours before. Watch for changes in the appearence of your eyes and eyelids, skin tone, tongue, and the color and temperature of your ears.

Only you can decide whether or not results are possitive, but remember that this is a long term solution, not a quick fix. Do not expect instant results by any means. If your body is loaded with toxins and yeast, it is going to take awhile to start clearing it out. Your gut cannot recover overnight. Like I said, it took months for me, though I did see noticable changes in as little as two weeks. However, I wasn't loaded down with prescription drugs. I was also very strictly adhearing to the diet, which is essential whether you are gluten intolerant or not.

I am familiar with headaches, sinus problems, neck pains, etc. It sure seems like what I was dealing with. Someplace in here I should probably make some kind of disclaimer, so consider this to be such a statement.

Now, if you decide to follow this advice, and it doesn't work after a reasonable period of time, then go to Google and search for "Threelac". It is expensive. I've never used it - only just heard about it, and I do not know how well it works compared to anything else. There is currently an ad on this forum for this site: Open Original Shared Link They speak highly of that product, but again I don't know any more than what they claim - no personal experience with it.

I know many people have been trusting their doctors, and follow their advice because they are supposed to know what they are saying. After all, they are the experts, and have all the training and access to info, right? Think again my friend. They get most if not all their new information from journals, which are paid for by the drug companies. Doctors get biased and inaccurate information which leads them to prescribe drugs. That's all they know. They get little if any nutritional training, unless they specialize in it. Drug reps frequently visit and hand out free samples.

I was in real pain and had many health problems until I went to a local organic food store instead of a traditional doctor. I stumbled into things and eventually found what worked for me. I'm still working on it for sure, but I don't have nearly the issues I did.

That's what I think of your case. If you've been at it for a long time and the problems continue, it's time for a different approach. Serious commitment and effort is required on your part. Please do not rely on any pill, natural or not, to just "make it go away". It's something you have to take an active role in.

I really hope you find what you need. I'd be glad to read your progress reports too.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.