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Hello i am frances from uk , i have been having real problems with my health for as long as i can remember, i have been diagnosed with chronic fatigue after all tests were clear about 6 years ago,

The last 4 years since having my 2 youngest kids has just been a constant battle with stomach pain, joint pain and extreme tiredness. In april 2012 i started having heart palpitations which are quite bothersome, i had tests and they were put down to ectopic arrythmias, i now take a beetablocker to help keep them under control, i have had bouts of low iron, hemagloban is always fine but iron stores swing up and down depending if i take supplaments, i have also had really low folic acid in the past as well as b12.

Since october last year any time i eat i get. Extreme pain in my right side it feels swollen and just agony, i have excessive wind and pain passing bowel movements. The only thing i can eat is home made soup and toast without the pain being unbearable, they removed my gall bladder as they thought that might be the culprit, unfortunately that didn't help, i had a ultrasound and colonoscopy and they were normal, i did a celiac home testing kit but that was also negative, but i honestly think it may be celiac disease. What do you think?? Ps i have been treated with every medication possible for ibs with no relief in fact the peppermint oil made symptoms worse. I would love to hear what your thoughts are, i feel so ill that even getting out my bed is a struggle! Xx

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Have you ever been tested for lactose or casein intolerance by chance?

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Hi, and welcome to the forum.

I don't mean to cast aspersions on the NHS, but from what I understand it is pretty hard to get a full celiac panel run over there. They tend to want to do the tTG and leave it at that. But if I were you I would want the whole shebang -

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

with the possible elimination of the first two as being older and outdated. But the Deamidated Gliadin Peptide is the newest test which has replaced the first two, and is highly specific to celiac. Is there any possibility of getting these tests done?

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I sure think that with your symptoms you would want to check into it. Celiac can be helped by diet, so if you have it, you should be able to get well. I am hoping you will get some definative answers with the help you need.

Diana

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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