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

Discouraged...tests Negative...body Says Otherwise....

LadyMac

Recommended Posts

LadyMac Newbie
LadyMac
Posted

Hello again. I first posted here in 2008 and found this site to be a wealth of information and support. Went gluten free and life was good..Until last year...I came back here, read about how this does occur, took this info to my New doctor (fired the last one) and she sent me to the University of Michigan Health Center...one of the most advanced medical facilities in the state. Doc ran blood tests, endo and colonoscopy tests, removed a polyp and said tests show no sign of Celiac. I have been absolutely gluten free since 2008. He said the test may reflect my gluten free diet and if I don't have Celiac I may be intolerant. He suggested I may have bacterial overgrowth that he wants to treat with an emperical antibiotic treatment to see if that works. If that doesn't work he wants me to take all grain and fructose out of my diet. Now, I've had thrush issues for quite some time. I've had some intense dental work and when the dentist puts antibiotics in my mouth I get thrush...if I take antibiotics, I get thrush...When I have thrush I avoid all sugar and nightshade veggies...I've thrown away hundreds of toothbrushes...so I'm dreading the course of antibiotics, even though the doc said he'd prescribe and anti-thrush swill. I'm allergic to antifungals so I can't wait to see Those side effects...

Last night I ate a salad at a restaurant where my daughter cooked last summer...so they know all about gluten and she knows what's safe for me to eat. Came home and ran to the john. Been in the john six times today. My butt and I can't take much more of this...

Every time I've had any health issues since 2008 I've come here, done a search and found my symptoms in many threads...Sometimes I'd read and have a huge 'AH HA!'moment...Sometimes I'd cry from frustration...I know tests are not the definitive answer...I know tests can miss celiac signs because the length of our intestines decreases chances of finding damaged areas...I know intolerance is possible...I know other intolerances can develop...I eat well, stay within my gluten free diet and it all just seems to be in vain. Now I'm back to square one. I'm tied to my house and bathroom for most of the day...I feel like I'm almost down to a diet of meat and cardboard...

Has anyone else felt disappointed when their tests were negative? Who would wish for a disease? Shouldn't I be relieved? I just want to feel better. I want to be able to leave my house without a change of underwear...I feel like driving to a Panera's Bakery and eating loaves of bread, then driving to Olive Garden for a pasta orgy.

Thanks for letting me rant...and thanks for all the valuable information and support you all provide here. Having a place to just type these thoughts, a place to let that stiff upper lip slip for a bit...priceless.

Thank You

Carol

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

It's so frustrating, isn't it, when you do everything right and you're still not right? Yes, of course your tests would be negative for celiac if you have been gluten free. He must know that.

Ummmm, can I ask a question? How come if he suspects you have an overgrowth problem that he is not testing to see what it is before "throwing" stuff at it?? You could have c.diff, candida, parasites, any number of things that a stool test would pick up. Then he could treat specifically for that, given how badly you react to antibiotics, antifungals, etc.

LadyMac Newbie
LadyMac
Posted
  • Author

It's so frustrating, isn't it, when you do everything right and you're still not right? Yes, of course your tests would be negative for celiac if you have been gluten free. He must know that.

Ummmm, can I ask a question? How come if he suspects you have an overgrowth problem that he is not testing to see what it is before "throwing" stuff at it?? You could have c.diff, candida, parasites, any number of things that a stool test would pick up. Then he could treat specifically for that, given how badly you react to antibiotics, antifungals, etc.

Of Course you can ask questions! I appreciate the feedback...

I mis-spoke...He gave me an antibacterial, not an antibiotic.

One of the first things my new family Doc did was get blood and stool work done...no parasites, no auto-immune disease...I did have low potassium and calcium was a little low. She also had an ultra-sound of my gall bladder done.

I looked up empiric therapy...'the initiation of treatment prior to determination of a firm diagnosis. It may be thought of as taking the initiative against an anticipated and likely cause of infectious disease. It is most often used when antibiotics are given to a person before the specific microorganism causing an infection is known. Examples of this include antibiotics given for pneumonia, urinary tract infections'

I have been treated with penicillin twice this past winter.

So, I was feeling a bit more confident about the Specialist's investigative skills...even giving him points for continuing to look into my situation and not just writing me off when the tests were, in his opinion, non-celiac. Then I looked at the next prescription...Nystatin, for thrush. I am allergic to anti-fungals...

As if gluten sensitivity isn't enough...we still have to endure this kind of ****!

I love your "throwing" analogy! Again, thanks so much for your reply. This forum has been my lifeline for almost four years. Thanks to All of you!

Carol

Archived

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

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


  • Member Statistics

    • Total Members
      132,552
    • Most Online (within 30 mins)
      7,748
    Adr3496
    Newest Member
    Adr3496
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.