Confused

[Donna1970]

Hi, I've just been diagnosed with celiac disease and I'm totally at a loss!

Im 48 years old but until the last 3 years or so I've never had any symptoms or concerns. None that I know of anyway. I'm not sure if the dx is correct as the blood test came back negative though the gp says that's common and that she is celiac and hers always shows as negative.

She gave me a very small list of things not to eat and have had to throw practically all the contents of my cupboards,fridge and freezer away. 

I looked online there is so much more and seemingly conflicting advice. I really need some help , I don't have a clue where to start. Any do's and don'ts, advice and help would really be appreciated.

[cyclinglady]

1 hour ago, Donna1970 said:

Hi, I've just been diagnosed with celiac disease and I'm totally at a loss!

Im 48 years old but until the last 3 years or so I've never had any symptoms or concerns. None that I know of anyway. I'm not sure if the dx is correct as the blood test came back negative though the gp says that's common and that she is celiac and hers always shows as negative.

She gave me a very small list of things not to eat and have had to throw practically all the contents of my cupboards,fridge and freezer away. 

I looked online there is so much more and seemingly conflicting advice. I really need some help , I don't have a clue where to start. Any do's and don'ts, advice and help would really be appreciated.

Get another doctor.  Seriously.  You can not diagnose a person with celiac disease without diagnostic testing.  Symptoms for so many illnesses often overlap.  It is impossible.  And to commit to a life-long diet without proof or at least exhausting every diagnosis is ridiculous.  

If your tests were negative (only 10% are seronegative and I would NOT call that “common”),  you need to post the test results to insure you received ALL the celiac tests and not just the good (but not perfect) TTG.    The next step would be to a Gastroenterologist for an endoscopy to obtain intestinal biopsies.  Things like cancer, h.plylori, etc. can be ruled out too.  Keep eating gluten or further testing will be invalid.  

I am not making this up.  Any doctor can google normal protocol.  

Open Original Shared Link

Open Original Shared Link

Be your own health advocate (which you are just by asking here).    If your GP is so careless, what else might she be missing?  

Please get a second opinion.  Document.  

 

[Donna1970]

Thankyou for the information. That's what I thought, she also said that there is no actual test . She did say after a month of gluten free diet she would refer me for tests which seems a bit conflicting lol

she says she is celiac herself so I had total confidence in her to begin with.

I had my first gluten free meal yesterday and it has made me ill, the usual symptoms I normally have ,usually it's cramps, diahorrea and bloating but yesterday and still continuing today I have been sick yet I don't on my "normal" diet.

No other dr near me is taking patients on I can't self refer to the NHS (in the uk) as far as I'm aware though I will look into it ,I can't afford private.

Thankyou again  

[Jmg]

1 hour ago, Donna1970 said:

 

No other dr near me is taking patients on I can't self refer to the NHS (in the uk) as far as I'm aware though I will look into it ,I can't afford private.

 

Hi Donna

You can ask for a second opinion: Open Original Shared Link

See if you can get a printout of the blood test results. The practice wasn't very helpful, I had to pay £5 for mine, but it was helpful. I found that the standard NHS test in my area didn't include all of the full panel. Which does leave a question mark as to whether my negative result was accurate. 

You don't mention your symptoms here but reacting to a gluten free meal is unusual unless gluten is an issue for you:

1 hour ago, Donna1970 said:

I had my first gluten free meal yesterday and it has made me ill, the usual symptoms I normally have ,usually it's cramps, diahorrea and bloating but yesterday and still continuing today I have been sick yet I don't on my "normal" diet.

So don't discount your doctor may be right, although this:

1 hour ago, Donna1970 said:

she also said that there is no actual test . She did say after a month of gluten free diet she would refer me for tests which seems a bit conflicting lol

is bizarre! You need to be eating gluten for tests to be accurate. The test by the way is blood test followed by endoscopy.   

Best of luck!

Matt

[Fredo]

59 minutes ago, Donna1970 said:

Thankyou for the information. That's what I thought, she also said that there is no actual test . She did say after a month of gluten free diet she would refer me for tests which seems a bit conflicting lol

she says she is celiac herself so I had total confidence in her to begin with.

I had my first gluten free meal yesterday and it has made me ill, the usual symptoms I normally have ,usually it's cramps, diahorrea and bloating but yesterday and still continuing today I have been sick yet I don't on my "normal" diet.

No other dr near me is taking patients on I can't self refer to the NHS (in the uk) as far as I'm aware though I will look into it ,I can't afford private.

Thankyou again  

When I was diagnosed about 2 1/2 years ago, it was by way of endoscopy/biopsy....  The biopsy revealed the celiac with wheat allergies!   I discovered that wheat and most gluten food are like twins in the realm of diet.  (not all gluten is from wheat, just that most modern foods use a form of wheat gluten in their processing...ie; 'modified food starch' as being one of the most over looked ingredients)     For myself, it was not until I altered my diet to ultra minimizing my intake of processed food, making myself educated as to how many different names "gluten" and "wheat modifiers" are used under, that I began to see a difference in how I felt and how my body began to heal!  I was one of those people who had the dramatic weight loss over a couple of years prior to diagnosis.  I went from being a 230 pound guy to 137 pound shell of a human being.  My advice, eat simple foods, and take nothing for granted in terms of ingredients.       One more thing... I completely agree with the above post in regard to being your own health advocate!  This is not a one size fits all disease and there are ALOT of   variations of symptoms with  people.  But when you do enough research you will find the common symptoms that align with your own and discover dietary guidelines which apply to your health!   And the health professionals are not well educated across the board, and more often than not are going on bits and pieces of random superficial hand me down sources...  So...  Yes 100% be your own health advocate!   good luck!  And you are in the right place to learn as you go!                     

[squirmingitch]

26 minutes ago, Donna1970 said:

 She did say after a month of gluten free diet she would refer me for tests which seems a bit conflicting lol

Unfortunately this happens all too often. The doc doesn't know what they're doing, tells the patient to "try" gluten free for a month & afterward will refer for testing. Testing after having been gluten free, requires a "gluten challenge" which is eating gluten every day for 12 weeks for the blood tests. Celiacs, almost always have much, much stronger negative reactions after having been gluten free that they often can not complete the challenge period & then they end up in diagnosis limbo with no good methods out.

[squirmingitch]

9 minutes ago, Fredo said:

just that most modern foods use a form of wheat gluten in their processing...ie; 'modified food starch' as being one of the most over looked ingredients)     For myself, it was not until I altered my diet to ultra minimizing my intake of processed food, making myself educated as to how many different names "gluten" and "wheat modifiers" are used under,

Just to clarify, in the US, all ingredient labels are required by LAW to list wheat as it is one of the top 8 allergens. If the modified food starch is from wheat then it MUST state wheat in the ingredient list. People in the US should not be afraid of modified food starch in an ingredients list. That used to be an issue years & years & years ago prior to the labeling laws that are now in place. Now however, it has become one of those great big internet myths that gets passed around & recycled again & again & again. 

[Fredo]

10 hours ago, squirmingitch said:

Just to clarify, in the US, all ingredient labels are required by LAW to list wheat as it is one of the top 8 allergens. If the modified food starch is from wheat then it MUST state wheat in the ingredient list. People in the US should not be afraid of modified food starch in an ingredients list. That used to be an issue years & years & years ago prior to the labeling laws that are now in place. Now however, it has become one of those great big internet myths that gets passed around & recycled again & again & again. 

Not to be argumentative, but to be clear...  My statement was based upon first hand experience from my own discovery of the correlation between my symptom flare ups and the ingredients I found listed on food labels...  And law or not...  I can guarantee you that not all food labels are as clear about their ingredients as the "law" would expect them to be.  I do know that there are labels that will clearly list the modified food starch as having been made from corn, but not all labels which list 'modified food starch' clearly indicate that it is from wheat...  Hence for my own peace of mind and health I only consume a product with 'modified food starch' if it clearly states that it is derived from corn...  Otherwise, from my own experience, it could be derived from wheat, and I prefer not to take chances.....   

[Donna1970]

Thankyou again to everyone

it really is very confusing, I never realised just how difficult checking ingredients are. The list of ingredients I was given was anything containing wheat,flour,oats and cereals.

when I referred to gluten free meal it was a cheese sandwich (I rarely have much of an appetite) the cheese appeared to have nothing allergenic that I know of other than milk and lactic ferments in bold lettering and I'm perfectly fine with lactose. Vegetarian rennet was the only ingredient I don't know of but wasn't bold lettering.

im certain it was the bread, Which was called "genius triple seeded" gluten free.  i had a slice and a half it felt like lead in my stomach made me sick as well as the diahorrea etc and really affected me.

i tried playing around with my own diet a while ago and found meat,fish and vegetables only made a huge difference. Anything else processed foods sauces etc set me straight back though dairy which I very rarely eat anyway doesn't seem to do any harm . I'm going to contact nhs and try get something sorted, I'm sick of living on Imodium - can't go anywhere or do anything without it!, feeling crap, tired, heavy and being bloated all the time.

Hats of to you all, I don't know how you do it!

sorry for blathering on , I really am stressed and confused with it all.

[Ennis-TX]

1 hour ago, Donna1970 said:

im certain it was the bread, Which was called "genius triple seeded" gluten free.  i had a slice and a half it felt like lead in my stomach made me sick as well as the diahorrea etc and really affected me.

i tried playing around with my own diet a while ago and found meat,fish and vegetables only made a huge difference. Anything else processed foods sauces etc set me straight back though dairy which I very rarely eat anyway doesn't seem to do any harm . I'm going to contact nhs and try get something sorted, I'm sick of living on Imodium - can't go anywhere or do anything without it!, feeling crap, tired, heavy and being bloated all the time.

Common issues with this disease are food intolerance issues, it sometimes happens you body associates a food with the foods that were making you sick and you become intolerant to them. In processed foods common ones can be xantham gum, certain starches, dairy, soy, peanuts, etc. A whole foods diet helps avoid these. Many times a intolerance will go away over time. Keep a food diary and write down everything you eat and the symptoms they give you. You can track down things that cause you issues and avoid them. If you think you found a culprit remove it from your diet for 2-7 days try it again for one day or one meal then remove again. Symptoms to the culprit should be easy to document this way. If you can get the purest form of the offended ingredient if you wish to be sure. Open Original Shared Link

[kareng]

8 hours ago, Fredo said:

Not to be argumentative, but to be clear...  My statement was based upon first hand experience from my own discovery of the correlation between my symptom flare ups and the ingredients I found listed on food labels...  And law or not...  I can guarantee you that not all food labels are as clear about their ingredients as the "law" would expect them to be.  I do know that there are labels that will clearly list the modified food starch as having been made from corn, but not all labels which list 'modified food starch' clearly indicate that it is from wheat...  Hence for my own peace of mind and health I only consume a product with 'modified food starch' if it clearly states that it is derived from corn...  Otherwise, from my own experience, it could be derived from wheat, and I prefer not to take chances.....   

They don't say that it is from wheat because, in the US, modified food starch is rarely wheat.  If it is wheat - it will either say something like "modified wheat food starch" or at the end of ingredients will say "contains wheat".  If its made from corn, they don't have to list "corn" and , of course, they aren't going to list wheat that isn't in the product.