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Hi everyone,

 

I would like to introduce myself....sorry if its a bit long.

 

I found you guys a few weeks ago after finding a possible link between my varied symptoms and gluten sensivity/celiac. So, i really wanted to say hi and thanks for the wealth of information on this forum which specifically has helped me at the doctors this morning!! 

First let me explain…….

 

Here is a summary of my history: 

 

Child to young adult:

Unexplained fainting

Sinusitus

Throat infections

Mild asthma

 

30´s

Chronic headache

Migraine

Brain fog

Vertigo attacks

Dizziness

Fatigue

IBS diagnosis following chronic diarrhea with urgency and abdominal pain

Severe sickness throughout 2 pregnancies and generally feeling unwell

Post natal depression diagnosed after both births

 

40´s

TMJ

Chronic headache

Migraine

From 2009 - 24/7 dizziness with associated symptoms such as inability to concentrate/think, confusion, disorientation, vertigo attacks. Huge amount of tests with different specialists including MRI scan. Diagnosed with Migraine Associated Vertigo in 2011.

Decreasing energy levels

Decreasing muscle strength

Anxiety and irritability

Joint pain

Diverticulosis diagnosed following routine colonoscopy in 2010. (Mother died of bowel cancer.)

From October 2014 - Fatigue, aching limbs, numbness in hands and feet,

From November 2014 - Chronic diarrhea with urgency and stomach pain. 

Weight loss

From Feb 2015 - Intermittent diarrhea, chronic total abdomen pain, shortness of breath, fatigue continues

Yesterday – Some sought of breathing attack……Asthma attack? Panic attack?

 

 

The locom GP standing in for my normal GP ran some basic blood tests in November after the onset of symptoms late October of last year. All negative.

In February on return to the GP I saw by chance the locom again and he said he would run a celiac test as well as other specific tests (thyroid (again) for example) and a stool sample. 

 

Now i should also mention that my 16 year old son has also had intermittent varied symptoms over the past year/ 18 months and had basic blood tests run last year. His symptoms are: Headaches, nausea, occasional diarrhea, intermittent abdominal pain (weekly,) weight loss, night sweats. Sporadic fatigue. He also has ADHD. So the locom doctor said that I should see my sons doctor and get him tested too.  Which I did and he said he would run the test for celiac as well as other specific things.

 

So we both had our blood taken about 10 days ago. (We have not made any changes to our diet yet and are consuming gluten.) I could see from the print out i was given for the nurse that both of us ONLY had the tTg IgA done out of the celiac panel....

 

I go the GP tomorrow for my results but I have been this morning with my son to see his GP.  I of course went armed with the full list of the celiac panel tests as having spent some time on this forum I just knew that I was going to need them..........and it´s a good job I did...

All of my sons tests were normal which on one hand is of course good news but also I think we are no further forward with knowing if he may have celiac disease.

 

tTg IgA - 0,1   U/mL     <12 negativo. 12-18 undetermined. >18 positive

 

So, his tTg IgA is very low isn´t it...0,1? and could be a false negative given that we do not know what his Total IGA serum is???? (immunoglobulin A??) He could be IGA deficient.........?? Am I understanding this correctly?

 

So I asked about the total serum IGA and how the tTg IgA could be a false negative but he didn´t seem to know what I was talking about and kept saying that the IGA antibodies were low so therefore no inflammation. I persisted about the Total Serum and showed him the celiac panel list and he agreed to run an Immunoglobulin A but not any of the others. So my son will go back tomorrow morning for the nurse to take the blood and wait another 10 days for the result!! 

 

I think my appointment tomorrow is again with this locom and I really hope he has read up a little about celiac testing by then….I know that it is best not to go gluten free until all the testing is complete but this could take forever at this rate….I have already decided that if all my testing is negative that I will go gluten free anyway as I have nothing to lose and can only possibly gain….

 

I understand the national health service not wanting to run the full panel immediately due to the cost but you would think that they would run a Total Serum IgA with a tTg IgA. If absolutely necessary we can look at going private to get all the required testing done with a gastroenterologist  if no referral is made to a specialst on the spanish health system.

 

Thanks for listening and I would welcome your thoughts on our symptoms and testing so far/ and in the future.

 

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Celiac.com Sponsor (A8):

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Have you tried eating gluten-free to see if either of you respond? I know its a big commitment to be strictly gluten-free, but you have listed a constellation of symptoms that makes me think its worth a trial.  And have you been tested for anemia, because you seem to have many those symptoms.  Best wishes, hope you find your answers.

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If my doc had not ordered the complete panel, I would not have been diagnosed. My TTg was very low and my total serum IGA was normal. I was positive on one of the DPG tests. My biopsy showed moderate to severe damage.

Keep eating gluten until all testing is complete. A firm diagnosis would be very helpful for your son if you can get it (accommodations at school/university, further testing for other issues like osteoporosis, etc.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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It is a good idea to get the total serum IgA tested.  About 5% of celiacs are low in IgA, which will affect the IgA based celiac disease tests.  Only about 1% of the regular population is low in IgA..

 

Getting more tests is a good idea, if you can do it.  I know it can't always be done.  My doctor would only order the tTG IgA, and then the EMA IgA if the first test was positive.  Mine was positive but my boys' were negative, and the DGP tests were not available up here yet.  I didn't want to push for an endoscopy (wait times of many months) so they went straight to gluten-free.  One son is probably fine but the other two definitely have a sensitivity to gluten, we just won't know if it is celiac disease or non-celiac gluten sensitivity (NCGS).

 

You know the full panel right?

  • ttG IgA and IgG
  • DGP IgA and IgG
  • EMA IgA
  • AGA IgA and AGA IgG (older tests that are less reliable)
  • total serum IgA
  • endoscopic biopsy - 6+ samples taken.

Perhaps show them the stats in these reports on the sensitivity of the celiac disease tests.  Most tests only catch 4 out of 5 celiacs, and some, like the old AGA tests, can miss more than they catch.  Running multiple tests is a necessity.

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

http://www.jfponline.com/index.php?id=22143&tx_ttnews[tt_news]=172034

 

Good luck!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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