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

Am I Just Grabbing At Strings?

mars817

Recommended Posts

mars817 Rookie
mars817
Posted

My husband told me last night that he thinks I'm grabbing on this celiacs because I want an answer but he doesn't think I have it and am grasping at straws. No he is not a jerk really (most of the time anyway:). He even was the one who brought up the idea of celiacs again after seeing show about it and thinking I do have all the symptoms. My brother has it, and I've been tested twice, both times my blood work was negative, I need to find it and can post, because I don't know if my overall numbers were low but I think the positive is greater than 20 and mine was 2.

I also had a endo/colon and my dr took 1 sample and it came back fine. So I had two tests that were negative.

I did the enterolabs and those came back positive but our dr says they are not something he believies. I do have one of the celiacs genes though.

So I guess I need a reality check..if my blood work was so negative, my intestines look good should I get off thinking I have celiacs? What else could cause all the symptoms I have (anemia (severe), gastrointestinal problems, hair loss, joint pain, numb/tingly arms, etc...)? I am having a pill cam endoscopy later this week because my doctor thinks my anemia is caused by a bleed that he couldn't find during the endo/colon, maybe that will shed more light on the matter. I know the other things they are thinking for the anemia is a bone marrow issue :/

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

Celiac.com Sponsor (A8-M):


AandGsmomma Apprentice
AandGsmomma
Posted

One sample from an endoscopy isnt enough. Depending on your total IGA number you may never test positive but that doesnt mean you dont have it. Do a strict gluten free diet for two months and keep track of your symptoms. If you need a test, try gluten again after 2 months and you will know right away if your right.

Takala Enthusiast
Takala
Posted

If you have a first degree relative (such as your brother or parent) with celiac, that means your risk for developing it is MUCH higher.

If you have the genes for celiac, that means you're also much more likely to have it.

If you have the symptoms, and the first degree relative with it, and the genes, and the doctor is still saying you don't have it, well, after he/she is done picking your insurance and wasting your time and health, then go on a gluten free diet. Don't cheat. Do it right. If you feel better, then gluten IS your problem.

There is such a thing as non- celiac gluten sensitivity, where the tests don't show positive, but the person does have a gluten problem which responds positively to diet change. The leading celiac/gluten intolerant medical researchers on this think that up to 7% of the population could fall into this category.

Tests can be negative for various reasons.

mars817 Rookie
mars817
Posted
  • Author

There is such a thing as non- celiac gluten sensitivity, where the tests don't show positive, but the person does have a gluten problem which responds positively to diet change. The leading celiac/gluten intolerant medical researchers on this think that up to 7% of the population could fall into this category.

Tests can be negative for various reasons.

From what I can read though it seems like non celiac gluten sensitivity wouldn't cause anemia. Is that true or could it still cause anemia?

1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will get better. I hope you will get support. I am sorry you have to go through this. I think it is more than a string you are grabbing at, but even if it isn't you need to improve your health. What else can one do when you aren't up to par? I hope you will get accurate results with future tests will be helpful. Let us know how the cam endoscopy comes out. Also, if you do try the gluten free diet let us know how the symptoms are helped or not helped.

Diana

ScottR13 Newbie
ScottR13
Posted

My husband told me last night that he thinks I'm grabbing on this celiacs because I want an answer but he doesn't think I have it and am grasping at straws. No he is not a jerk really (most of the time anyway:). He even was the one who brought up the idea of celiacs again after seeing show about it and thinking I do have all the symptoms. My brother has it, and I've been tested twice, both times my blood work was negative, I need to find it and can post, because I don't know if my overall numbers were low but I think the positive is greater than 20 and mine was 2.

I also had a endo/colon and my dr took 1 sample and it came back fine. So I had two tests that were negative.

I did the enterolabs and those came back positive but our dr says they are not something he believies. I do have one of the celiacs genes though.

So I guess I need a reality check..if my blood work was so negative, my intestines look good should I get off thinking I have celiacs? What else could cause all the symptoms I have (anemia (severe), gastrointestinal problems, hair loss, joint pain, numb/tingly arms, etc...)? I am having a pill cam endoscopy later this week because my doctor thinks my anemia is caused by a bleed that he couldn't find during the endo/colon, maybe that will shed more light on the matter. I know the other things they are thinking for the anemia is a bone marrow issue :/

Reading that a relative has Celiac, there's a great chance you have a Gluten Allergy. With a Gluten Allergy, you can have all the same symptoms as Celiacs except for the damaged Villa (which is, in part, how they diagnose Celiacs).

I have a Gluten Allergy & here's a link to the tests I had done ... Open Original Shared Link

Here's another link from another Lab with 2 very good videos @ the bottom of the page... Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

Hi Mars,

There is also something called non-celiac wheat sensitivity. The article linked explains a study that was done to document it's existence. If you have that condition, you won't get a positive on celiac disease tests. The immune system response is called an innate response, but the normal celiac tests do not detect that. But you can have similar symptoms as a person with celiac. This is new research that does confirm the existence of the condition. Since it is a newly identified condition, there aren't any tests being done by mainstream doctors for it right now. There may be tests devised in the future though. They seem to have identified 2 versions of this condition, not just one.

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,555
    • Most Online (within 30 mins)
      7,748
    Laura65
    Newest Member
    Laura65
    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.