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Do I See A Doctor


teemaree

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teemaree Apprentice

I have been gluten free now for approx a year,

After a new doctor discovered my gluten intolerance.

The diet helped me so much, it helped with my rashes, anixety and depression, migrains,

and most of stomach pains, and a hored of other minor aliments.

So I have been so gratefull for some respite.

The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them.

I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help.

Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong...

In a nut shell....

I feel I may have non hodgkins lymphomia

the glands in my the left side of my groin are very very enlarged..

Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw...

I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause)

I have itchiness around the lower part of my back and in my left ear...

I am so weak and tired, needing 3 naps at least a day.

My eyes are aching.

And I just feel blahhhhhh

my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite

I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of....

But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help.

What do you all think?...

does anyone out there have non hogkins?... and experienced the same thing?

are all the symptoms I have written just all part of celiac and something that will pass with time?

I seriously need some view points on this....

please help me?


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OliveBranch Apprentice

I don't know much about lymphoma, and I don't know if all of those symptoms can come from Celiac (certainly some of them can), but it definitely sounds to me like you should see a doctor. Only that way will you have peace of mind. I can completely sympathize with your fear of not being taken seriously or simply not being listened to--this has happened to me many times, and I wish I could go the rest of my life without ever seeing a doctor again. But if you are looking for a specific diagnosis (or to prove that you DON'T have that disease), only a doctor can do it for you. You shouldn't be embarrassed at all, especially with the specific symptoms--the doctor should at least be able to tell you why your glands are swollen. Good luck to you! I hope you will be blessed with a doctor who will listen better than most of them do.

I have been gluten free now for approx a year,

After a new doctor discovered my gluten intolerance.

The diet helped me so much, it helped with my rashes, anixety and depression, migrains,

and most of stomach pains, and a hored of other minor aliments.

So I have been so gratefull for some respite.

The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them.

I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help.

Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong...

In a nut shell....

I feel I may have non hodgkins lymphomia

the glands in my the left side of my groin are very very enlarged..

Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw...

I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause)

I have itchiness around the lower part of my back and in my left ear...

I am so weak and tired, needing 3 naps at least a day.

My eyes are aching.

And I just feel blahhhhhh

my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite

I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of....

But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help.

What do you all think?...

does anyone out there have non hogkins?... and experienced the same thing?

are all the symptoms I have written just all part of celiac and something that will pass with time?

I seriously need some view points on this....

please help me?

teemaree Apprentice

Thank you for your kind words...

They were very much appreciated...

Well I phoned the medical center that I use to visit, and just asked for an appointment with any doctor...

I was given a lovely indian woman. and she listened to me...

Then went sort of mad at me... she said why have you let this go on so long...

I said well the last time I complained about these things, I was told there was nothing wrong...

She looked on her computer to see who I had seen, and there was no notes about anything except a sore wrist that I also had....

I said my husband begged the doctor to look into what is wrong with... that Im deterioting before his eyes,,,and this nice doctor said, I'm so sorry, sometimes us doctors need to do more than just listen, we need to act!...

She confirmed my suspecions, she said that she believes I well could have lymphomia...

She examined me...and also got the opinion of three other doctors, as to what was the quickest roads to take to get on top of everything...

She got me in quick smart to an oncologist , she didn't want to muck around..and asked them to see me fast, because there is normaly a long wait...she is sending me for cat scans and biospys..

All she kept saying to me, is.. Im so worried for you this is very serious . And she kept saying WHY???WHY??? have you let this go on for so long?... I told her the truth, I was scared of being called a hypercondriac.

Now I am glad that I wrote my thoughts and feeling here, because that gave me the power to make myself go to the doctors. I'm not really scared now of any results, all I wanted was to know....if what I suspected was true...or least to just have those things checked so that I wasn't left feeling I knew all along, and noone would help.

So I will cross the next bridges as they come, but I at least feel better that I was listened too.

YoloGx Rookie

I agree--you should see a doctor. Non Hodgkins is more treatable than most cancers according to the Mayo clinic if its caught early. Meanwhile however I am hoping you have eat more basic whole foods with tons of vegetables--rather than the sugary bleached flour foods that you see in various articles etc.

Bea

Dada2hapas Rookie

I would never recommend avoiding seeing a physician. For me, if my "current" physician seems unfamiliar with my celiac issues, I just search for one more suitable/informed.

Good luck and best wishes. :)

ravenwoodglass Mentor

I am glad you got in to see this doctor quickly. I think a lot of us can identify with being blown off by doctors and being told we are hypocondriacs. It does make us leary of doctors after years of it. I am hoping that the tests turn out well and that it turns out that perhaps you do have gluten sneaking in, your symptoms could also be from that but the tests will tell for sure if you do have lymphoma.

Do follow Yolo advice and eat a clean, unprocessed diet if you are not doing so already. Let us know how things go.

ang1e0251 Contributor

I don't have anything to add but wanted to say I'm thinking of you and can understand your hesitation about seeing your dr. I'm glad that you went.


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mushroom Proficient

I know where you come from, teemaree, and I am sorry about where you find yourself. Good for you to finally seek some help, and good wishes for your diagnosis and treatment. We'll be thinking of you.

teemaree Apprentice

Thanks again everyone for your support!

I thought I would update where I at with this....

I've had blood tests and I haven't my results as yet...

Has ultra sound and ct scans...

the ultra sound fount 2.01 lymph node and three other non vascular lymph nodes in right groin

and three non vascular lymph nodes in left groin...

I have the biopsies on these tomorrow.

They found 5 cysts in the liver and cyst on right anexa

bulky uterus with endetrial fluid

BUT NO MASS OF LYMPHADEMOPATHY

So things now really hang on them lymph nodes being begnin ....

but there are no masses of lymphademopathy, which is great news!

if the nodes are malignant, at least we are on top of things , before they could have been far worst!

but Im truly hoping they aren't malignant

mushroom Proficient

I'm pulling for you. Truly hope things turn out fine tomorrow. Good luck. [[[[hugs]]]]

Ahorsesoul Enthusiast

teemaree,

Know you will be in my prayers. So glad you found a doctor who listened. Keep us informed on how you are doing.

Wolicki Enthusiast

We're all pulling for you! Let us know what happens and be well.

Janie

YoloGx Rookie

Am so glad you went in and found this so quickly. Crossing my fingers with you that it is OK and not malignant. But even if it is, it is better to know about it now and have the real chance of treating it successfully before it gets carried away...

Bea

tarnalberry Community Regular

Keeping my fingers crossed for you!

jerseyangel Proficient

I'll be thinking about you--best of luck!

ang1e0251 Contributor

Thinking about you and hoping this is the key to your future perfect health!

OliveBranch Apprentice

Teemaree--

So glad you've had some good news! I hope that the problems are all manageable and that you will both BE well and FEEL well soon.

Thanks again everyone for your support!

I thought I would update where I at with this....

I've had blood tests and I haven't my results as yet...

Has ultra sound and ct scans...

the ultra sound fount 2.01 lymph node and three other non vascular lymph nodes in right groin

and three non vascular lymph nodes in left groin...

I have the biopsies on these tomorrow.

They found 5 cysts in the liver and cyst on right anexa

bulky uterus with endetrial fluid

BUT NO MASS OF LYMPHADEMOPATHY

So things now really hang on them lymph nodes being begnin ....

but there are no masses of lymphademopathy, which is great news!

if the nodes are malignant, at least we are on top of things , before they could have been far worst!

but Im truly hoping they aren't malignant

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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