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

How Do You Know...


Chase Corin

Recommended Posts

Chase Corin Newbie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?


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



Celiac.com Sponsor (A8-M):



hexon Rookie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

I actually like some of the gluten-free breads better than their gluten counterparts. Try glutino or Udi's bread. Keep them in the freezer and toast them to thaw them out. I'll go ahead and tell you now that you may just want to microwave it or toast it in a skillet since your toaster likely is going to cross contaminate any gluten-free stuff you put into it. Progresso has a cream of mushroom soup that doesn't have any gluten in the ingredients.

I can totally relate with the chronic D. I gave up gluten mid November of last year and finally saw some relief from the cramping and D (until recently, where I seem to react to anything). I'll go ahead and tell you though that once you cut out gluten it makes testing for celiac/gluten intolerance very difficult if you want a formal diagnosis. I got a negative celiac blood test anyways, which is pretty common, and I don't particularly care which term defines my issues. I just know it's worked pretty well so far.

mushroom Proficient

Yes, as the pp says, if you want a celiac diagnosis you have to continue to eat gluten up until the time of testing. If you resume eating gluten now, one week would not make any difference; two weeks and the results would not be necessarily valid. So get back on the gluten and tell your doctor that you NEED to be tested for celiac now because you are going to quit eating gluten because you can't stand it any more. Tell him about yuur recent weight loss and your year of diarrhea. Have you ever had the celiac blood tests or just the endos? These are the blood tests you should have:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If the blood testing is postive they will probably want to do another endo, for which you should also continue eating gluten.

Incidentally, has anyone ever told you that a gluten free diet is helpful for Crohn's also?

By the way, welcome to the board. Ask any questions that come to mind. :)

AVR1962 Collaborator

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

Is there anyway you could see a new doc? Having already been diagnosed with Crohn's it would lead me to think this very possibily could be celiac. Bad thing about testing is it is not accurate and a person who tests with negative lab results could retest a year later with positive results. If you want to persue an actual diagnosis you would have to continue to consume gluten. However, if the diagnosis is not as important you can always try a gluten-free diet and see if there you find any improvement in your health issues.

You would really be surprised how soon you give up the bread cravings once your body is detoxed from glutens. I was also a big carb eater, loved my cinnamon rolls and tortillas. Now, I don't even find gluten-free bread appealing and it is not because of the taste, it's just that I no longer have those cravings. There are so many foods to eat and so many that are much more beneficial for our bodies. Once you rule out gluten, it really is not all that hard to live without. I do know however, what you are saying, I felt the same. I could not imagibne a whole lifetime of eating no glutens but really it is not as hard as I thought it would be.

ravenwoodglass Mentor

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

Chase Corin Newbie

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

My D does wake me up in the middle of the night so I will definately mention that to my doctor.

Archived

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

  • 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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    2. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

    3. - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

    4. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,151
    • Most Online (within 30 mins)
      7,748

    Nici
    Newest Member
    Nici
    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

    • knitty kitty
      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
      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
    • Jmartes71
      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • 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.