Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Pre Diagnosis

aghasue
 Share

Recommended Posts

aghasue Newbie
aghasue
Posted

Hi there. I’m new to this group and looking for some answers so would be grateful for any comments. 
I have suspected that I may have Celiac for some years now. 
initially I had a severe rash on my shins which was unbearably itchy. At the time I was unaware of dermatitis herpetiformis so never considered celiac as a diagnosis. I attended the GP but after trying numerous medications without any success, and no diagnosis, I continued to have flare ups of this for a number of years. It eventually subsided but following a routine appointment for fatigue and low mood my GP did blood tests and established iron and folate deficiency. This was treated but after short periods of improvement it has recurred several times. I was referred for endoscopy and colonoscopy about 4 years ago and these did not flag up any issues. At this time a biopsy was taken for celiac but it was clear. (That said, prior to the procedure I was on a restricted diet and would not have had much gluten intake). Blood tests have not identified celiac either. I have not had many gastrointestinal issues aside from soft unstructured and fatty stools and an urgency to go to the toilet. I have now come out in a clustered blister type rash on my back, shoulders and bottom. It is symmetrical on both sides but is not itchy at all. The GP has been unable to diagnose this and has made a dermatologist referral for me. Blood tests identified folate and iron deficiency again. Other symptoms include visual disturbance and brain fog with lack of concentration and extreme fatigue. I had attributed many of these symptoms to menopause but just wondered if It is possible that I could have celiac disease as HRT has not alleviated my symptoms. How difficult is it to diagnose? And what are my next options?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Celiac disease is not difficult to diagnose but you must be eating meaningful amounts of gluten prior to any kind of testing. Here is what the Mayo Clinic guidelines are:

For the serum antibody tests: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for 6-8 weeks leading up to the blood draw.

For the endoscopy/biopsy: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for at least 2 weeks prior to the procedure.

If you cut back on gluten prior to testing, the inflammation in the small bowel lining begins to subside. The inflammation is what produces the antibodies that the serum test is designed to detect. Likewise, if you cut back on gluten prior to the endoscopy/biopsy it may allow healing of the villi lining the small bowel such that damage doesn't show up in the microscopic lab analysis of the samples taken. Also, many physicians do not do a thorough job during the scoping and don't take enough samples from enough areas. Damage can be patchy and easily missed. We recommend several samples be taken from both the duodenum and the duodenum bulb.

When seeking the antibody tests, as for total serum IGA, ttG-IGA and Deamidated gliadin peptide (DGP IgA and IgG).

You certainly have a lot of symptoms that could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease and shares many of the same symptoms. A dx of NCGS requires first ruling out celiac disease. The antidote is the same for both: total avoidance of gluten for life.

 

aghasue Newbie
aghasue
Posted
  • Author
43 minutes ago, trents said:

Celiac disease is not difficult to diagnose but you must be eating meaningful amounts of gluten prior to any kind of testing. Here is what the Mayo Clinic guidelines are:

For the serum antibody tests: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for 6-8 weeks leading up to the blood draw.

For the endoscopy/biopsy: The daily consumption of gluten in the amount equivalent to at least 2 slices of wheat bread for at least 2 weeks prior to the procedure.

If you cut back on gluten prior to testing, the inflammation in the small bowel lining begins to subside. The inflammation is what produces the antibodies that the serum test is designed to detect. Likewise, if you cut back on gluten prior to the endoscopy/biopsy it may allow healing of the villi lining the small bowel such that damage doesn't show up in the microscopic lab analysis of the samples taken. Also, many physicians do not do a thorough job during the scoping and don't take enough samples from enough areas. Damage can be patchy and easily missed. We recommend several samples be taken from both the duodenum and the duodenum bulb.

When seeking the antibody tests, as for total serum IGA, ttG-IGA and Deamidated gliadin peptide (DGP IgA and IgG).

You certainly have a lot of symptoms that could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS is 10x more common than celiac disease and shares many of the same symptoms. A dx of NCGS requires first ruling out celiac disease. The antidote is the same for both: total avoidance of gluten for life.

 

Thank you so much for your comprehensive reply. It’s a great help.

trents Grand Master
trents
Posted

By the way, aghasue, welcome to the forum!

RMJ Mentor
RMJ
Posted

Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis. 

aghasue Newbie
aghasue
Posted
  • Author
8 minutes ago, RMJ said:

Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis. 

Hi RMJ - I will suggest this to him. However it is my understanding that dermatitis herpetiformis is always extremely itchy and the rash I have at the moment is not. Can you have dermatitis herpetiformis without the itchiness?

RMJ Mentor
RMJ
Posted
1 minute ago, aghasue said:

Hi RMJ - I will suggest this to him. However it is my understanding that dermatitis herpetiformis is always extremely itchy and the rash I have at the moment is not. Can you have dermatitis herpetiformis without the itchiness?

I don’t know, but there is a DH forum as part of celiac.com - you might ask there. 

DH forum

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      @Rejoicephd, Would you consider adding a B Complex to your supplements? I was taking a multivitamin and still became deficient. There's a question as to how well multivitamins dissolve in the digestive system. I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery...
    2. knitty kitty
      - knitty kitty replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      almost a year in recovery - so many questions about to give up

      @kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies...
    3. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    4. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
    5. junell
      - junell posted a topic in Related Issues & Disorders
      1

      Help!

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,648
    • Most Online (within 30 mins)
      7,748
    Livinonaprayer
    Newest Member
    Livinonaprayer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
×
×
  • Create New...