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

Do I See A Doctor

teemaree

By teemaree
in Coping with Celiac Disease

Recommended Posts

teemaree Apprentice
teemaree
Posted

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?

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

Celiac.com Sponsor (A8-M):


OliveBranch Apprentice
OliveBranch
Posted

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
teemaree
Posted
  • Author

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
YoloGx
Posted

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
Dada2hapas
Posted

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
ravenwoodglass
Posted

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
ang1e0251
Posted

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.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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
teemaree
Posted
  • Author

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
mushroom
Posted

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

Ahorsesoul Enthusiast
Ahorsesoul
Posted

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
Wolicki
Posted

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

Janie

YoloGx Rookie
YoloGx
Posted

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
tarnalberry
Posted

Keeping my fingers crossed for you!

jerseyangel Proficient
jerseyangel
Posted

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

ang1e0251 Contributor
ang1e0251
Posted

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

OliveBranch Apprentice
OliveBranch
Posted

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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      Gluten related ??

      By knitty kitty · Posted

      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
    • Kara S
      Finding gluten free ingredients

      By Kara S · Posted

      Hello, my family is very new to Celiac Disease so forgive me for asking what Warrior Bread is and is there a recipe for it online?
×
×
  • 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.