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

New, And Hoping I Am Posting In The Right Place!

somewhat-damaged

Recommended Posts

somewhat-damaged Newbie
somewhat-damaged
Posted

Hi! My name is Christina and I do hope I am posting this correctly. Very nice to meet everyone!

I am here because I am not quite sure what to do. I have been battling an "unknown auto immune disease" since as long as I can remember. I have been to 5 different specialists ranging from Hematologists to Rheumatologists.

So far all that anyone can tell me is that I have SOMETHING and they don't know what. After years of constant frustrations and no diagnosis I decided to research my symptoms myself, and hope somehow I got somewhere with my research. One day while I was searching around for my intestinal symptoms, I ran across this website and a few others. It was like a light bulb went off. Alot of the symptoms seem to fit both my mine and my mothers symptoms. She too has spent her life with no answers and almost the same symptoms as me.

We both have had horrible bowel problems which we consistently are told is probably IBS. I have diarrhea so bad sometimes, just getting my daughter to school can be a challenge. I have spent my life plagued by cramps, and frequent bathroom trips. This was the first and perhaps most constant symptom. Then the fatigue started, which I was told was because I was Iron Deficient anemic. So that started the frequent iron supplements. My mother spent weeks on Hospital administered vitamin B12 treatments but after months they never could get her levels normal. She is always deficient. I have not been tested so I am not sure if that is an issue for me or not.

I also have other abnormal labs, from a real high RDW (red Blood cell distribution) chronically abnormal C Reactive Proteins, and others. I have been tested for everything from cancer to Lupus. Then I started getting dermatological symptoms. I would get little blister like bumps all over my fingers and palms. This I heard was probably DE. In fact I have them now.

To top everything off, my fiance and I have been trying for a long time to have a baby only to suffer miscarriages and probable fertility issues. I just want to know whats wrong.

Of all the things I was tested for, I have never been tested for Celiac. Neither has mom. I think in part this was never considered because I have always battled with weight. No matter what I eat, or how much I exercise I never could manage to loose weight. Finally my doctor decided it must be attributed to medical reasons although they don't know what. From what I have read though, you CAN be over weight and still have celiac right?

So now I am not sure how to approach my doctors with my concerns. I considered just starting a gluten free diet and seeing if it helped, but then learned that that could effect blood tests to diagnose it if the diet DOES work.

So I am hoping someone has some suggestions for me. Have any of you suspected Celiac before being diagnosed? Is there anyway to get my doctors to take me seriously when I decide to talk with them?

Any help would be appreciated, I am just darn right frustrated now.

Thank you!!

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

You just say to your doctor: I want a full Celiac panel run please. If he objects, just say: I have done a lot of research lately and I keep running across Celiac and I feel that it just might be my issue. There is no harm in finding out is there doctor? I am so hoping you will be the doctor to help me, but if you cannot run these tests, then I will have to find a doctor who will. So I appreciate your consideration in this.

somewhat-damaged Newbie
somewhat-damaged
Posted
  • Author

ShayFL-

You make it sound so easy! I guess part of the problem has been crappy insurance, so in turn I am used to less than par medical treatment. I'm not used to it being so easy to talk to them!

Should I ask my regular physician or my Rheumatologist? It could take longer to get into the rheumatologist but I have a feeling he would probably be more knowledgeable about Celiac and related tests.

Also I guess I would hate to sound silly or be wrong...it's just that so far this is the only thing that makes SENSE, based on my symptoms. From what I have said, does Celiac testing sound like a reasonable request?

ShayFL Enthusiast
ShayFL
Posted

Sounds reasonable to me. :)

Try your GP first and if he says no, try the next doctor. If all else fails and you can afford it.....you can contact directlabs.com You can get any test you want without a doctor. But of course you have to pay for it.

gfpaperdoll Rookie
gfpaperdoll
Posted

You might want to think first if you want that official diagnosis on your medical records. If you are young & might be changing careers etc...

If you do go on the diet & get better then really that is the diagnosis.

You can also test thru Enterolab.com I highly recommend them.

Yes, being overweight does not mean you are celiac or gluten intolerant. I have an overweight family & they are all sick with celiac - but well, you will find out that like others, they just deal with the symptoms, take some meds & mossy thru life - half alive & cranky...

somewhat-damaged Newbie
somewhat-damaged
Posted
  • Author

My medical records are already a mess with all the health problems I had thus far. I also have osteoarthritis at the lovely age of 26 and the insurance companies all run from me with mach speed already!!

I think I have been sick for so long that nothing seems to get to me anymore. I have found a way thus far to maintain a relatively happy attitude and am convinced no matter what I can keep that up. Hell after two bone marrow biopsies and cancer scares, I can handle it!

I'm a photographer so freedom with my job is a big plus.

I appreciate your information and personal experience. You have no idea.

Thank you.

*lee-lee* Enthusiast
*lee-lee*
Posted

it certainly won't hurt anything to be tested for Celiac. i'm still fairly new to this but your symptoms seem pretty typical, from what i've read on this board. make sure you continue consuming gluten until after the blood work and subsequent endoscopy.

if you test positive in the blood, your doctor will most likely refer you to a gastroenterologist for a biopsy of your small intestine. most doctors claim the biopsy is the "gold standard" for a diagnosis...most people on this forum say if the blood is positive for antibodies, that's proof enough. since you've had symptoms for so long and if you do have Celiac, there's good chance you have visible damage to your intestines.

if there's a chance your insurance won't cover the endoscopy, you can opt to not have it done but that doesn't mean you can't start a gluten free diet. that's the good thing about Celiac...treatment is so simple!

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

Celiac.com Sponsor (A8-M):


somewhat-damaged Newbie
somewhat-damaged
Posted
  • Author

I_Love_bread,

Thanks for the reply, I appreciate the information!

I called my doctor today and she agreed testing would be wise and is going to set it up for me on Monday. I guess we'll go from there!

Thanks to everyone who replied, when I first stumbled across this forum, I knew it would a great place for information and for support if the tests DO come back positive.

nora-n Rookie
nora-n
Posted

Hi, just surf around here for a list of the necessary tests.

I gather you are in the U.S. so there are a number of tests available, ask for all of them, including the IgG versions of them, and the total IgA which is not a celiac test btw.

Here en europe we usually now only can have the tissue transglutaminase test and they also automatically run the tottal IgA, and if one is IgA deficient, only then they bother t run the IgG versions. The thing is, some pwople only have one of the tests positive, and some have all negative and they still are celiac.

In the U.S. the antiendomysium test is available, they have phased it out and only do the ttg test here, and the antigiadin test, phased out most places, and maybe some more tests. Gene tests too.

You have to be consuming a fair amount of gluten in order to test positive on the blood tests. I only ate gluten every once in a while and tested low, but not zero.

nora

Archived

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

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


  • Member Statistics

    • Total Members
      132,129
    • Most Online (within 30 mins)
      7,748
    Raz
    Newest Member
    Raz
    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
      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?
    • jessicafreya
      Tamale ingredients

      By jessicafreya · Posted

      I'd like to make tamales and wonder if anyone has recs for corn husks free of cross contact for a sensitive celiac little boy. Thks!
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
×
×
  • 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.