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

Don't Know What It Could Be Then?

KMMO320

By KMMO320
in Food Intolerance & Leaky Gut

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

I posted a few days ago about a possible yeast problem...

SInce April of this year, I have been poked and prodded by 4 different doctors, racked up thousands in medical bills and just been sick for what seems, forever. Since 1997, I have been diagnosed with "IBS" and I just lived with it until I started feeling other things like migranes and dizziness, that is where the new drs came in. Initially, I was deficient in vitamin D and Iron, which is why they suspected Celiac. ALl tests came back negative, but with my IGA deficiency, IBS, immune problems, thyroid and all my other symptoms, my Dr was willing enough to say I had Celiac DIsease and to go gluten-free. Prior to the "diagnosis" they put me on vitamin supplements and before even going gluten-free, my levels were all back up.

Well, It has been 2 months, and while my IBS has seemed to settle (FINALLY!), everything else is the same. Nausea, dizziness, shortness of breath, heart palpatations, foggy head. Always after I eat, and it can happen randomly. Doesnt always happen WHEN I eat, but when it does, it is after I eat. Could be an apple, could be a gluten-free sandwich, could be some chips, could be scrambled eggs. I just never know.

I thought it was yeast, then I thought it was sugar, caffeine, salt, dairy.

So, 2 days ago, after being exclusively gluten free, I started eating it again to see what happened. The first day, I ate a bagel and a muffin. Nothing happened. Yesterday, I ate crackers and cheese. Nothing happened. this morning, I ate a muffin. Nothing. I am waiting and waiting....but I have been feeling fine.

Because my tests were all negative anyway, and my vitamin levels went back up on supplements before even going gluten-free and because I am not having reactions, I am thinking maybe I do not have celiac disease after all. I can't deal with any more doctors or medical bills, and I am thinking it is time for experimentation. I just don't even know how to begin. There is no denying that going gluten-free seemed to help my digestive system, I just want all of the other problems to stop too :(

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

Celiac.com Sponsor (A8-M):


SMDBill Apprentice
SMDBill
Posted

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

KMMO320 Contributor
KMMO320
Posted
  • Author

Thank you, no I havent begun to isolate, but I think that is my next step. My primary was so sure it was Celiac that I guess I jumped on that idea too because it would be so easy to explain. I think I have a big process ahead of me :(

GFinDC Veteran
GFinDC
Posted

Please read this article and the study linked in it. This new research (2012) shows 2 possible additional gluten related conditions exist in addition to celiac disease. They are newly identified and don't show up on celiac disease testing. The symptoms can be very similar though.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    2. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    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

    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.