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Please Help! Am I Confused, Or Have I Been Misdiagnosed On Some Level?

Guest Lore

By Guest Lore
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Lore
Guest Lore
Posted

Hi everyone,

Brace yourself, this is long! But I really need advice! :unsure: I would LOVE some feedback, please!!!! :D

I am new to the site, and thought I could get some feedback on some questions I've had lately.

Basic background on me, leading up to my recent blood test for Celiac:

I am 23 years old, and have been struggling with "stomach issues" since I can remember. There have been many reasons thrown at me for the constant stomach pain while growing up: stress, picky eater, anxiety about traveling, a need for routine, lactose intolerance, IBS, ulcers... the list goes on. A few years ago, after I went from 120 lbs to 100 lbs over the course of a summer, my Endocrinologist did some blood work and suggested that I may have Celiac Disease. Apparently, the antibody he tested for is no longer a factor in determining Celiac, so I have since been tested.

However, since I was first "diagnosed" by the Endocrinologist, I've maintained a gluten-free diet, and my health and overall life has dramatically improved. I no longer have cystic acne, I feel happier, and am having less stomach pain, at least the pain that I had been having my entire life. For a while that is. In the past year, since being gluten-free, I've approached many more obstacles. Even when I am almost positive that I've eaten gluten-free all day, by the end of the evening my stomach is so bloated that I look like I'm 5 months pregnant. I've been keeping a food diary, and have noticed that a few things tend to bother me when I add them back into my diet:

-eggs

-dairy

-almonds (recently I have been avoiding all nuts)

-corn seems to be fine, but POPPED corn tends to make my stomach severely bloated

-carrots

I do eat tomatoes all the time, and since removing these things from my diet mentioned above, I'm still getting the bloated stomach. So I am wondering if the tomatoes have something to do with it as well.

On top of these additional food "allergies", I've experience many other things that I've read are attributed to Celiac Disease:

-loss of tooth enamel (I just visited the dentist last week, and in the past year I have developed SEVEN potential cavities NOT due to unhealthy gums or brushing habits- I brush and floss three times a day- but due to loss of enamel)

-stomach bloating on a regular basis

-irregularity

-increased PMS

-kidney stones

-dry, flaking patches of skin around my eyes and temples (not sure if this is related, but something I've noticed)

-I am CONSTANTLY cold. My fingernails turn blue/purple when I feel cold, and once and a while one or two of my fingers will go numb. I've read that this can be attributed to Reynaud's (sp?) which can be related to Celiac

-Muscle pain: I am an athletic girl who just 6 mos ago could easily touch my toes, and now have trouble doing so without sharp pains

-fatigue, especially after I eat a meal. Adding to previous athletic ability, I used to be able to run and exercise a few times a week, now I feel so tired to even get the motivation to go to the gym.

-HUGE increase in cravings for SUGAR! :P I am always craving candy, chocolate, and sweets.

-joint pain

:(

So, after noting these symptoms for a few months, I decided to see a GI Specialist @ UCLA Medical Center to "update" my diagnosis and speak with someone about these further developed symptoms and try to get a grasp on exactly what I am dealing with here. After testing me for Celiac, along with the genetic factor, apparently he said that my tests all came back negative.

I am shocked! :o How can i have all of these related symptoms, some so specific, AND feel dramatically better on a gluten-free diet, yet not have Celiac Disease? My dr. said that in rare cases, Celiac does not show up on the standard blood work, and that further testing must be done. HAS THIS HAPPENED TO ANYONE?? :huh: I was almost positive that I had Celiac... I research it daily and it just seemed to fit everything that my body was feeling.

My doctor gave me two options: he said that either 1) I don't have Celiac, but have a gluten allergy, among other food allergies or 2) I can come in for further testing, which would actually consist of me ingesting some sort of gluten and him monitoring the results and doing blood work at the time of ingestion.

Can anyone relate?? If you have a gluten ALLERGY, not Celiac, do you experience the same symptoms? Has anyone been given a negative diagnosis, but later found out that it was incorrect?

Any thoughts you can offer would be great... I feel so lost. :blink:

Thank You! ;)

~Lore

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi,

First, it is late and I think I am following you clearly. Get a copy of your test results and people on the site can help you a little better knowing the exact tests and results :D

If you have been eating gluten free, any blood work and celiac testing results will NOT be accurate. While eating Gluten free the damage to your intestines is healing or healed by now - that is why you were feeling better. So the recent blood work will show "Negative" for the disease.

As for gene testing, I belive they can only test for two of the genes. But others know more about this.

I had negative blood work but positive biopsy for Celiacs. My toddler showed inconclusive to the biopsy. Both of us react with 100% certainty to Gluten foods. So we are CEliacs. Mine from the biopsy and the baby from the reaction to the food. Many people are unable to get the full biopsy done or for one reason or another try this gluten-free diet and feel much better on it. Be aware, that some biopsy diagnosed people do not have the physical signs of a reaction after eating gluten, their intestines are being damaged by consuming gluten.

You can have an allergy to wheat AND be a Celiac. They are two very different items.

Dairy frequently is a problem food for Celiacs. For some it is only during the recovery stage. For others it is a permanent problem. Look at the gluten-free/CF diet. CF is casein free (dairy free). Most people recommend eating gluten-free/CF for the first several months until you heal.

As for the other foods that are bothering you. Please see an allergist to get tested for food allergies. At a minimum, since you mentioned you avoid nuts, keep some Benedryl around and look into the signs of serious allergic reactions - anaphylactic allergies to nut are more common than you think and they can be deadly. (One kid in peanut /tree nut anaphylactic so this makes me concerned :( )

Look into "Nightshades" they are the tomatoes and potatoes and others. Many of us have intolerances to them too.

Now you sound like you have had a similar history with Drs to me and many others. Decades of problems and the Drs never seem to help. I have stories that go back to me being an infant and being very sick and I was finally diagnosed in my 30's. Unfortunaetly after so many years of bad and unhelpful Drs I really grill a Dr before I believe whta they tell me and they must explain in detail all testing etc. Even after my biopsy, Drs ask me in shock how I know that I have Celiacs and what do I eat?

As for your most recent Dr, PLEASE GET A NEW GI DR!!!! No Celiac on this board would follow that DRs answer of eat Gluten in the office and he'll take blood work. That will not do any good. You must eat gluten daily for months for a decent testing. You sound like you have Celiacs and you respond well to the diet and you have definate responses to gluten - that means you are a Celiac. Consider Gluten rat poisen from now on :P . What you need is a better GI who has current Celiac patients - What do you live and get a recommendation from the board members.

Also, you probably are having a big problem with hidden gluten and unknown contamination. That could be the source of a lot of your discomfort and pain. BTW, I have never had a good result at a dietician. Post more questions and start researching. As the Dr who performed my biopsy told me - I'll know far more about this diet in a few months than he will ever know. His job is to spot the signs and to diagnois. He cannot keep up with the diet if he does not live it.

Good luck and feel free to ask for more info or PM.

-AnnMarie

lizard00 Enthusiast
lizard00
Posted

I have to completely agree with the previous poster. I was tested after close to a month of being gluten-free, and my results were negative for celiac. But... I know that I gluten is toxic for me. So, whatever they want to call it; intolerance or celiac (which may be one in the same), I have it. I react to it. And trust me, I've purposely glutened myself twice just to make sure. And then there are the accidentals as we learn. So, I do know for sure that gluten is bad for me, and I don't need a blood test to tell me so.

As for your GI, I agree on that too. Once you stop gluten, it takes months of consuming gluten again to even have a possiblity of the test being accurate. And that's not promising, as the tests have a tendency to give false negatives. There definitely are others on this forum who have been through the same things, hopefully they'll see this thread and reply to you too. THis is a great place to get answers.

It is also a good idea to get a copy of your results, if possible. Many drs (sadly) don't know how to interpret the results, or if the number isn't quite high enough, they'll tell you negative. Though you may actually have the antibodies present... so definitely get that and post it.

It's late where I am too... off to bed. Hope that I made some sense! :huh:

Nancym Enthusiast
Nancym
Posted

You might want to read some of the articles by Dr. Lewey. He writes a lot about multiple food intolerances.

Open Original Shared Link

It won't be possible to get this diagnosed by a typical GI doctor, they're just not informed.

pixiegirl Enthusiast
pixiegirl
Posted

Since you've been gluten free for a while, of course you will test negative for it. A year after I went gluten free I tested negative for it and I had a biopsy (for other GI issues) and that was negative for Celiac. Of course my GI doctor knows I have celiac but she said I was doing really well with gluten-free since a year after all tests were good. So that's not surprising.

Many of us seem to have other food sensitivities, it took me a few years after I went gluten-free, with the help of an allergist and and elimination diet to figure out what I can't eat, some foods that I can eat in small amounts, and which are fine.

After being on this list for quite a while I've come to realize that Celiac is a journey and it usually takes a while. I just have been able to maintain the attitude that its a constantly interesting one and I keep getting more healthy with every day.

Good Luck, Susan

Guest Lore
Guest Lore
Posted
Since you've been gluten free for a while, of course you will test negative for it. A year after I went gluten free I tested negative for it and I had a biopsy (for other GI issues) and that was negative for Celiac. Of course my GI doctor knows I have celiac but she said I was doing really well with gluten-free since a year after all tests were good. So that's not surprising.

Many of us seem to have other food sensitivities, it took me a few years after I went gluten-free, with the help of an allergist and and elimination diet to figure out what I can't eat, some foods that I can eat in small amounts, and which are fine.

After being on this list for quite a while I've come to realize that Celiac is a journey and it usually takes a while. I just have been able to maintain the attitude that its a constantly interesting one and I keep getting more healthy with every day.

Good Luck, Susan

Thanks, Susan! And everyone else too, I really appreciate it!

My only concern is that if my doctor diagnoses me "negative", I won't get the right guidance as to what other testing needs to be done- bone density, etc. If I'm not mistaken, those tests should be ordered by your Dr. in order to be covered by insurance, etc. I also think getting a food allergy test is necessary- starting today I am eliminating apples, corn, eggs, and the "nightshades" mentioned above (potato, tomato, peppers, eggplant, cherries). However, what is your advice on the next step to take after a negative diagnosis, clearly due to the fact that I've been eating gluten-free for months now?

~ Lore

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