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Ukguy

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Ukguy Newbie
Ukguy
Posted

Hi. Just joined. I am 56 and knew nothing about celeac. I gave had itchy anus and feeling if broken glass in my stomach every day if my life for 44 years. I saw numerous doctors and said I thought acid was exiting my intestine and causing skin irritation and burning. I has to wash my bottom 3 to 6 times every day in hot water and simple soap.They all said that was impossible and I was a problem patient. It affected me so badly I didn't go on holiday for 18 years so that I could be near to warm water and personal toilet. Cold water or wipes are no good. Only warm water. Then a guy two days ago was discussing a new beer gluten free and when he said affect, I told him I suffered similar. He told me to try gluten free. I have done it now for 48 hours and for the first time in 44 years I have not had to wash my bottom 4 times every 24 hours. I may now tell the doctors what idiots they are and request a test.

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kareng Grand Master
kareng
Posted

Please know that you need to be eating a regular gluten containing diet to get accurate Celiac blood test and endoscopy.

Jmg Mentor
Jmg
Posted
2 hours ago, Ukguy said:

I may now tell the doctors what idiots they are and request a test.

I know how much you'd like to tell them what for, but you'll need their help through the diagnostic process so try and restrain that impulse!

You need to request a coeliac test but you may encounter some resistance. You need to make as strong a case as possible for the test. Get an appointment asap and make some concise notes detailing any symptoms you think may be relevant. Coeliac or Gluten Sensitivity can affect you in many different ways and it's possible there's some other signs you've not yet identified. 

You should go into that appt well prepared and as calm as possible. :)

There's some links collected in this post. The info about testing in it is a little out of date however. I'll post the revised list below the link. Although you'll probably be limited to what the NHS deems sufficient in your area. I didn't get the DGP test for instance. 

There's more info at the forum faq stickied above also. 

I very much hope you've found your answer and can find relief with a gluten free diet. Just try to be patient a little longer as you need to be on gluten for any tests to work. If you get through testing and get a negative result don't despair, I did also but going gluten free resolved my symptoms. 

Best of luck :)

Matt

 

Nowadays it's only these tests:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
22 hours ago, Ukguy said:

Hi. Just joined. I am 56 and knew nothing about celeac. I gave had itchy anus and feeling if broken glass in my stomach every day if my life for 44 years. I saw numerous doctors and said I thought acid was exiting my intestine and causing skin irritation and burning. I has to wash my bottom 3 to 6 times every day in hot water and simple soap.They all said that was impossible and I was a problem patient. It affected me so badly I didn't go on holiday for 18 years so that I could be near to warm water and personal toilet. Cold water or wipes are no good. Only warm water. Then a guy two days ago was discussing a new beer gluten free and when he said affect, I told him I suffered similar. He told me to try gluten free. I have done it now for 48 hours and for the first time in 44 years I have not had to wash my bottom 4 times every 24 hours. I may now tell the doctors what idiots they are and request a test.

I am sorry you have been unable to go on Holiday for 18 years due to this. So glad you found that gentleman who mentioned your issues maybe gluten. It got you here.  Now Karen and JMG have great advice. They have helped me much since I joined. The fact you saw a difference is excellent news. Hang in there a bit longer and go get that blood test. I am uncertain why your Dr's did not show more concern about your GI tract earlier. I know it is frustrating delays occur with diagnosing this illness it is all too sadly common. Often as you will find on these forums another celiac/NCGS is the one who tells us that we may have an issue, and encourages us to go see a GI,  and as JMG has done even prepared the afflicted with a dialogue to assist in helping a busy doc listen and help the patient be heard.

"I may now tell the doctors what idiots they are and request a test. "

As for this!!!!!!!!- one of my symptoms is I lose my tolerance for people, and think they are idiots too, some of which are of this career profession too no one is immune to my Celiac RAGE!  (Okay maybe my cat he is too cute and not of human species) In fact some people just breathing can bother me if I was fed poison AKA gluten!!!!! The people on this forum here understand that  I am on my last nerve as ataxia can get to us and it affects our mood too. :)

You have been dealing with years of frustratingly excessive hygiene that was out of your control

So yep try to muster up some calm to utilize them for their skill and lab blood test, scopes, to get this diagnosis done swiftly and quickly. You can get a little cranky with the Dr it coveys the essence and reality however keep the idiots expression for us on the forum- we know exactly what you mean.

Above all I hope this time you get a great Dr that puts the others to shame!

Good luck

Edit: PS as Karen broke the news you have to eat the gluten a bit longer and keep up the hygiene routine- to put this journey to an end. Then once  diagnosed, you heal and get the diet down. I want you to take an awesome holiday, but you must read the celiac travel section to do so safely.

 

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