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Newbie And Needing Advice About What To Say To Doctors
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Hi everyone,

 

I am a newbie on this site but really needing some advice. I have had 'IBS' since my early childhood and have suffered with many days and nights lying on my bathroom floor or passing out on it with terrible cramping and diarrhea.

 

Last week a doctor looked over my history and asked me if I had celiac disease as I seem to gain weight even when I can only sip chicken soup and have diarrhea for days, I have chronic sinusitis, sore throat, ear infections, Acid reflux, had my gallbladder removed and recurrent mouth ulcers. He aske about my family history and as my mum is the same as me and my nan had hypothyroidism and passed away from Lymphoma he seemed pretty convinced. However he sent me home with some antibiotic ear spray for my sore ear....I decided to go gluten free and see if this sorted out my cramping and diarrhea too. this is the story of my life. I go to the doctors and they never give me any answers.

 

So I discovered that once giving up gluten for a day or two my cramping stopped but still had diarrhea. I quit dairy and all of a sudden I am pain and diarrhea free! Happy days. Then today my lovely husband went to costa and got me a soy latte and I ended up in hospital with an allergic reaction! I felt like I had the flu run up behind me and jump on me! I almost blacked out both at home and the hospital but felt much better with piriton and hydra cortizone injections. Now I have been told I need allergy tests to sort out what I can have and what I cant.

 

So now I am afraid to eat or drink anything and I feel that I dont know what to say to my doctor because I dont know what tests to ask for here in the UK. I am also worried for my kids as going gluten free seems to have helped my 4 year olld daughter with her witholding poo that has been going on for 1 1/2 years (told it was due to stress as her dad has been very ill with cancer) and my 6 yr old son is being tested for adhd and aspergers which can also be related to celiac can't it? I am not sure I am looking at the right websites so unsure. I am pretty sure the doctors are not taking me seriously because they assume I am suffering from anxiety from my husband's illnesses but I have been sick for over 40 years and he has only been sick for 2!

 

Anyhow, could someone please tell me if there is a list of allergy free foods I can be safe to eat until tested and if celiac will turn up on an allergy test?? I just don't know and I am afraid to look at too many websites as some of them are written by complete nutters.

 

thank you for your time

Bunny

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Bunny, I'm very sorry to hear about how sick you've been, as well as your husband and children. I hope you continue to improve.

First, please be aware that the shots of hydrocortisone (steroid) are contradictory to Celiac testing (perhaps autoimmune testing in general). Steroids are used to treat autoimmune disease and can send it into remission, and can give false negatives on testing. I've heard 1-3 months as the time to be off them before accurate testing can be performed.

Second, Celiac is not an allergy and won't be detected during allergy testing. You need full Celiac testing panels run.

Third, there are no "allergy-free foods", since everyone is allergic to something different. In your case, I'd find out the ingredients in that latte and start there. Eating whole, unprocessed foods is the easiest way to elimate allergens that are additives...but it may be bigger than that. Unfortunately, only time and testing will tell.

Fourth, and perhaps most unfortunate...you and your children must continue to eat gluten filled diets for accurate celiac testing. The tests check for antibodies against gluten, and you must eat gluten to produce antibodies.

And finally, if you don't have it in you to continue to eat gluten, you can simply go gluten-free and forgo testing. You won't be right or wrong in this decision - it's a personal choice. Given 40 years of symptoms and the relief you've found already, I'd be reluctant to eat it again if I was in your shoes.

Best of luck.

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Bunny, I'm very sorry to hear about how sick you've been, as well as your husband and children. I hope you continue to improve.

First, please be aware that the shots of hydrocortisone (steroid) are contradictory to Celiac testing (perhaps autoimmune testing in general). Steroids are used to treat autoimmune disease and can send it into remission, and can give false negatives on testing. I've heard 1-3 months as the time to be off them before accurate testing can be performed.

Second, Celiac is not an allergy and won't be detected during allergy testing. You need full Celiac testing panels run.

Third, there are no "allergy-free foods", since everyone is allergic to something different. In your case, I'd find out the ingredients in that latte and start there. Eating whole, unprocessed foods is the easiest way to elimate allergens that are additives...but it may be bigger than that. Unfortunately, only time and testing will tell.

Fourth, and perhaps most unfortunate...you and your children must continue to eat gluten filled diets for accurate celiac testing. The tests check for antibodies against gluten, and you must eat gluten to produce antibodies.

And finally, if you don't have it in you to continue to eat gluten, you can simply go gluten-free and forgo testing. You won't be right or wrong in this decision - it's a personal choice. Given 40 years of symptoms and the relief you've found already, I'd be reluctant to eat it again if I was in your shoes.

Best of luck.

Thank you so much for your helpful reply. I actually have been doing some reading on the forum now and have a better idea about what I am facing. Am I right in thinking that if I ask my doctor to test for the coeliac genes I can get a diagnosis that way? From what I can see I think I am going to ask him to test my adrenal function and my thyroid as I feel I have some similar symptoms to others on the forum with these problems as well.

thanks again

Bunny :)

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Hi Bunny,

 

You must be eating gluten to be sure the test doesn't false negative.  I wasn't clear if you understood that.

 

D

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If you have the genes linked with celiac it simply means you have the possibility of developing it. So, knowing your genetic status is only used to eliminate possibility (which may or may not be accurate, the genetic area is constantly evolving).

A positive genetic test is not a positive celiac diagnosis. Disgnosis is made by antibody bloodwork and endoscopy, or by skin biopsy in cases of dermatitis Herpetiformis.

There are many overlapping symptoms of Hashimotos and Celiac. I can personally attest :). Autoimmune disease stresses the adrenals, so it's highly probable you have adrenal issues if you are autoimmune. I'm sure any chronic illness would have the effect, really.

One thing I will add is that you could try testing - but I only advise this if you are confident you can move forward trialing a gluten-free diet (since you've seen relief already) regardless of result. Some people, faced with negative results, may choose not to trial a gluten-free diet. I'd hate for you not to continue your trial since you've already had some success...but testing now is an option. It just may be (false) negative...... But if you are determined to go gluten-free then quite frankly, there's no better time than NOW.

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If you push for a biopsy now, your intestines will likely still be damaged enough  to be diagnosed celiac - regardless if you are eating gluten or not.  It can take months or longer for adults to heal who have had it for a long time.  The blood test would be negative, unless you are eating gluten.  The gene tests can only tell you if its possible for you to have it.  It can rule it out, but not confirm it, most of the time.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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