Can I Trust This Diagnosis? Help!

[punkinrice]

This is my very first posting anywhere, and I feel so frustrated and confused. You all seem so kind and full of knowledge, so I'd really appreciate some help.

I have been diagnosed with IBS for many years. I also have other symptoms that have been escalating through the past 12 years:

-abdominal pain (with or without bm problems, hyper active bowel sounds)

-loss of dental enamel

-rashes on my back (but not itchy)

-psoriasis

-asthma

-various environmental allergies (getting regular desensitization injections)

-tingling in my legs

-AWFUL joint aches (my feet spasm and I have trouble walking after sitting a bit...almost like an arthritic old person)

-muscle cramps and spasms

-cold hands and feet, and sometimes my hands feel a bit numb

-chronic fatigue - I can sleep for 10 hours and still wake feeling tired

-brain fog and trouble remembering words

So here's the investigations:

-TTG was negative

-IgA (not total IGA) was high

-colonoscopy and endoscopy looked normal, but evidence of chronic gastritis and duodenitis on the pathology report, with leucocytes (T cells) present. It says not enough to diagnose even early stages of celiac disease on the report but to look at other laboratory data before ruling out celiac.

-ANA test was negative

-felt sooooo much better (most symptoms eliminated) with gluten free challenge, and then when reintroduced gluten, symptoms progressively got much worse over 6 months

-Celiac disease runs on both sides of my family.

I have three doctors with three different opinions, and I am so frustrated because I just want to know for sure.

1 doctor says it is highly suggestive, and put me on a proton pump inhibitor and told me to eliminate gluten.

Another says that she doesn't care about the TTG, that the high IgA is suggestive along with the history of other immunological issues I have and the microscopic inflammation with symptoms that she would hang her hat on a celiac diagnosis.

These are both my family gp's. My gastroenterologist says it is not celiac because the bloodwork is negative and the biopsy says gastritis and duodenitis, so an acid problem, not celiac. By the way, H. Pyelori is negative.

Any insight? PLEASE?

[Emilushka]

I think it's time to try going gluten-free. The tests are imperfect. You had some improvement with the gluten-free diet before. Be super-anal about being VERY GLUTEN-FREE and see if that helps clear things up.

Honestly, everyone's goal in this scenario is to get you feeling better and off the PPI. Tell your doc you're trying to go gluten-free and then do it. If it makes all the difference in the world, you have your answer. Remember always that the tests are imperfect.

The first doc sounds like the one I'd listen to if I were you. That doc at least sounds open to listening to you and your symptoms and taking the bloodwork and biopsies with a grain of salt, which is how a doc should be. I say, stick with that one.

Good luck. It's rough dealing with this. Most of my tests were negative. Only my TTG was positive, and my biopsies were all negative aside from mild chronic gastritis with the correlating esophageal changes from reflux. Sometimes you just have to take whatever evidence you're given, even if you'd rather have a stronger case.

[gf-soph]

I will cast my vote as 100% you need to be gluten free. I too had a gastro who said that positive blood work and a negative biopsy (in your case inconclusive) meant no celiac, but he didn't even mention gluten intolerance. I was extremely sick for another year before a good dr set me straight, and I started gluten free.

A lot of your symptoms sound very familiar to me. Just as an example, I used to get terrible foot cramps all the time. They went away almost immedaitely after going gluten free, and they only come back if I get glutened.

I think there is a good chance that you will very well on a strict gluten free diet. It can be hard when we get ambigious test results, but you don't have to tick every box for a straight celiac diagnosis to know that gluten is damaging your body. Have a look at some of the posts and articles about gluten intolerance, and you will see why it's a good idea to give it up.

If you haven't already, get your dr to run some blood tests for your nutrients. Full iron, B12, folate, vit d, thyroid are a start, and no doubt others who know more than me can let you know what others to look at.

Long story short, gluten free for you!

[punkinrice]

Thank you both for your insight! I guess it is just frustrating. When I first tried going gluten free, I felt amazing for the first time in many years...but at the gluten free cooking classes I went to, everyone suggested I get the biopsy to know for sure otherwise I would tire of the restrictive diet and lapse back...which I eventually did slowly one bagel at a time. Within a few months I was feeling so awful that my doctor was testing me for lupus. I suppose I should have read between the lines, and I thought the tests would be more conclusive than they were...yet something was obviously going on if there is microscopic inflammation in both the stomach and duodenum, and elevated IgA. I have been gluten free for three days now, and already my feet feel better and I am more alert. My "rumbly tummy" has settled down some too. So I guess that's word enough to change. I just wanted more of a definitive diagnosis so I can know for sure (and not "want" to eat non-gluten-free like last time) and also to claim the food cost difference on my taxes. I find the hardest is when travelling...which I do a lot with my job. Any suggestions?

[punkinrice]

One other question- do you think it would be beneficial to get the genetic testing done?

I will cast my vote as 100% you need to be gluten free. I too had a gastro who said that positive blood work and a negative biopsy (in your case inconclusive) meant no celiac, but he didn't even mention gluten intolerance. I was extremely sick for another year before a good dr set me straight, and I started gluten free.

A lot of your symptoms sound very familiar to me. Just as an example, I used to get terrible foot cramps all the time. They went away almost immedaitely after going gluten free, and they only come back if I get glutened.

I think there is a good chance that you will very well on a strict gluten free diet. It can be hard when we get ambigious test results, but you don't have to tick every box for a straight celiac diagnosis to know that gluten is damaging your body. Have a look at some of the posts and articles about gluten intolerance, and you will see why it's a good idea to give it up.

If you haven't already, get your dr to run some blood tests for your nutrients. Full iron, B12, folate, vit d, thyroid are a start, and no doubt others who know more than me can let you know what others to look at.

Long story short, gluten free for you!

[T.H.]

I find the hardest is when travelling...which I do a lot with my job. Any suggestions?

For myself, I bring my food with me, or scope out places I can get gluten-free food at stores near where I will be travelling. At hotels, you can often get a fridge and/or microwave for free in the room if you note that it is for a medically restricted diet. Or they will often let you store your food in a fridge of theirs.

For cooking, if you stay in places with kitchens? I've been checking out RV-type camping sets, with stainless steel pans that nest into small spaces, so they are easy to transport.

If you travel by car, there are these mini microwaves that I've been checking out that a friend of mine really liked. They're just big enough for a plate of food. Some can plug into a lighter socket in the car to power them, even.

Bento boxes are often a way to go for me, too. They are pretty, easy to carry, and when I have to eat them instead of what people around me are eating, they still feel really nice and elegant and I don't feel so left out, honestly.

[tarnalberry]

The most important test is how you feel. If you feel better being gluten free, why would you choose to feel crappy by eating gluten?

[punkinrice]

The most important test is how you feel. If you feel better being gluten free, why would you choose to feel crappy by eating gluten?

Thanks for all your help everyone! My family doctor is writing me a "diagnosis letter" for future use, and I have gone strictly gluten-free...and feeling better and better every day. I can't believe the difference in only a little over a week! The brain fog is lifting, I am remembering my words again, the aches and pains are lifting, the rash I've had on my back for 5 years is healing, I have more energy, and my GI tract is having more good days than bad...so definitely the right decision!!

The only thing I am still struggling with is the bad GI days still once or twice a week...much better than multiple times each day, but still not 100%. How long did it take all of you to start to feel completely healed? I am thinking about a secondary intolerance, like lactose? I am fine with cheese and yogurt, but now that the gluten is out, I am wondering if the milk in my coffee, or perhaps the coffee itself, is upsetting my stomach/intestines. Any advise or help is much appreciated. I am just soooooo thankful to find this site! Having a support network is so incredibly important, and you all are so wonderful

[mushroom]

Yes, I would definitely drop the lactose - milk, cream, frozen yogurt (not real yogurt), ice cream until your gut has healed because you are probably not making the enzyme to digest them (made at the very tips of the villi which are the first area of the small intestine to be damaged by gluten - I was lactose intolerant for years before I knew about the gluten ).

[Takala]

You can use coconut milk instead of real milk for coffee creamer.

[punkinrice]

You can use coconut milk instead of real milk for coffee creamer.

What a great idea!! Thanks!

[Kay DH]

You might also find that you are more sensitive to gluten now. Before I went gluten-free in January I could eat 1/2 slice of bread without an obvious problem, but now it is at the crumb level. Check all labels for possible gluten. As long as I avoid the nasty molecule, I am 100%, but I got cc'd by some gluten-free coconut today (processed in a plant that also processes wheat...). I got cc'd by a cutting board in October (I'm not afraid of knives, just cutting boards).

[Rowena]

I got cc'd by a cutting board in October (I'm not afraid of knives, just cutting boards).

And wooden spoons.

As for what to do, there is no way under the sun a doctor can get it right one hundred percent of the time. I have been sick for the past year and a half before going gluten free. Doctors thought it was because of my miscarriage. Other doctors believed I had Polycystic ovarian disease. I had gain an unexplained fourty pounds even though I barely ate anything. The most recent doctor tested me for celiac, and me, being curious did research on it. I determined to start the diet even if I was not diagnosed with celiac. I was desperate. I had to do ANYTHING to make myself feel better. And sure enough this diet has been working well for me thus far. I have more energy to live life. Cooking is fun again, and so much more.

So celiac or not, no one cares what the official diagnoses is in the long term of things, (though it would be nice to have to true) do the diet as it obviously worked for you in the past. And dont give in to your gluten cravings

[RESO]

The most important test is how you feel. If you feel better being gluten free, why would you choose to feel crappy by eating gluten?

I was gonna say that, but you already did. :-)