Could Be Celiac? Starting Gluten Free?

[Erbear289]

New to the forum, hoping some of you may have advise or similar experiences?

 

Well I am 28 years old,for at least the last year and a half I have been suffering from diarrhea about 3x a week. I've only narrowed it down to 3 specifics brands/products that I absolutely will get D from. Otherwise it is completely random. I never really told doctors about this (or anyone for that matter).

 

Four months ago I started to get an increasingly present "weird feeling" in my abdomen. Not pain, but a weird "something-is-not-right feeling".

About five weeks ago that turned into severe abdominal pain and bloating. The pain is usually a pressure, fullness feeling as if someone is holding on to my intestines. Sometimes it is crampy and occasionally severe stabbing. The pain has made me leave work crying, crawl into bed in the fetal position until it passes. The bloating has been so bad at times that I can't get any of my pants to fit other than sweatpants.

 

Now, in 2011 I was on a diet program called Ideal Protein and lost 57 lbs in 5.5 months. I felt great while on the diet. In the past year, I have gained 40 of that back. During this past Christmas season, I was about 15 lbs less than I am now, and I gained most of those 15 lbs beginning in January. I thought maybe I was pregnant because it seemed to ALL be in my stomach area. All tests negative. I eat pretty healthy about 75% of the time.

 

A typical day for me:

Breakfast - a NutriBullet smoothie consisting of spinach, fresh fruit and sometimes chia seeds.

Snack - greek yogurt

Lunch - Salad with chicken

Dinner - sometimes a subway sub, chicken, occasionally pasta or soup

 

I do drink, not daily or anything. I consume a lot of water, about 1-2 iced coffees (black with  1 Sweet N Low) per day, and 1-2 diet cokes per week.

Obviously there are times I eat and drink more. I rarely excercise (and yes, I know I should).

 

Now for the symptoms:

First of all, I am 5'1" and now 270 pounds. No matter how hard I try I don't lose weight and lately have been gaining.

--12 years ago, I was diagnosed with Fibromyalgia.

--I have also been diagnnosed with Asthma (altho it only seems to be an issue in the cold weather or when I have an upper respiratory infection)

--In 2008 I was working out with a trainer at the gym 4x a week for 2 months and only lost 2 lbs. I baffled the trainers and so my doctor took me for testing and I was Vitamin D deficient (level was 13).

--2 years ago I had this CRAZY itchiness in my scalp. For at least 10 years I get these little bumps in my scalp that I would anxiously pick at (usually producing a clear liquid or blood). When the itchiness happened I went to the doctor who gave me Predniose for 10 days, which would take the edge off. I now see a dermatologist who has told me I have dermatitis (something or other). I do a scalp oil treatment once a week and also use dandruff shampoos each day.

--In December 2011-January 2012 I was constantly covered in hives. Each day in a different spot. Saw a rheumotologist who diagnosed me with chronic hives. He put me on Doxepein which made me gain 25 lbs in 3 months, I then weaned off and stopped taking. Occasionally I still get hives but nothing like those months. (and when I do get them, they will cover my entire stomach or leg)

-In March 2013 I had my regular blood work done, all fine (thyroid too), except Vitamin D was at 31 and they put me back on the 50,000 IU's per week.

 

Current medications:

Celexa (for fibromyaliga)

Zanaflex (muscle relaxer) each night

Birth control

Vitamin D

Green Coffee Bean extract

Multivitamin

 

SO back to current time, Primary Care Doctor (PCD) had me do a stool sample and sent me for a colonoscopy. Stool sample tests all came back negative. She advised me not to make any diet changes until we "have this figured out". Colonoscopy was last Wednesday. Doctor said everything was normal but he took a biopsy just in case. I should have those results in a few days.

 

Now, I called my PCD and asked them to send me for the Celiac blood test. They told me I needed to ask the GI. I called the GI, they told me to ask PCD. SOMEONE send me for a blood test- its not that hard!!!

 

I felt GREAT the day of my colonoscopy. That evening I ate chicken parm (my fav meal). Next day - oatmeal, graham cracker bar, salad .....got stomach pains and Diarrhea back at 4pm and was down for about 3 hours.

 

This among all of my reading makes me think it could be Celiac. At this point I feel like I am just making myself sick by continuing the "normal" diet that contains gluten in order to eventually get the blood test and have it be accurate. My parents advised I start gluten free and tell the doctors that, and I can eat it again if needed for test.

 

I feel like the doctors are giving me the run-around. I am frustrated and sick of feeling sick and missing work and activities.

SO should I begin gluten free for now? Monday I plan to call my Rheumotologists office (also an Allergy office) and ask to get food allergy testing. My diet will not affect the food allergy testing, correct?

 

Any advice/thoughts?

 

 

 

 

 

 

[shadowicewolf]

If you want to be officially tested, you need to stay on gluten. It is better to do it now than to do it later.

[Erbear289]

If you want to be officially tested, you need to stay on gluten. It is better to do it now than to do it later.

How do I get one of the doctors to do it? I feel like they keep telling me the other one has to do it. Will the allergy testing assist at all ? (in your experience)

[mushroom]

Either one of those doctors can order the testing for you.  It is possible your PCD does not know what to order; these are the tests:

 

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

 

The first two tests can be safely omitted; they are the older tests and least sensitive.  All the others are important, especially the Deamidated Gliadin Peptide, being the most specific and sensitive for celiac.  And the last test is a control which validates the others. 

 

Give your doctor this list and tell her that the GI has requested that you have the testing done before he sees you.  Do not go gluten free until you have finished with all testing for celiac as it can affect whether your results are positive or negative.

 

I never bothered with allergy testing.  It sometimes helps after you have given up gluten to figure out different things  you are intolerant to.  Right now, you need to find out if you have an autoimmune reaction to gluten, which allergy testing will not pick up.  Allergy testing is totally separate from celiac testing and not affected by gluten.  You can be both allergic to wheat and autoimmune to wheat, by the way.  

 

If your doctor says you have dermatitis herpetiformis, that in and of itself is a diagnosis of celiac disease, being the skin form of it.  It is a very itchy, stinging rash which can drive you mad.  It usually leaves scars.  There is a section of the forum devoted to it with a photo bank of pictures for comparison with your own.

 

Best wishes in getting a diagnosis, and welcome to the forum.

[Takala]

I would suggest you go to the PCP's office, and tell them to their faces in the office that you have symptoms of celiac, that the GI is not agreeing to test for it,  and you need to be tested for celiac by a blood draw lab test, and tell them also if you need AN APPOINTMENT to get the doctor to agree to do this, then they are to schedule one right, right now, and you're not leaving until they do so. 

 

Never let your PCP blow you off like that.  And that GI is a real freaking con artist, not looking at both ends of your digestive tract, so I wouldn't bother to go back to him/her after pulling that stunt.  Most of these idjiots think a person has to be thin and wasting away to be a celiac, when many of the undiagnosed adults are instead puffing up because of metabolic, malnutrition and thyroid problems. And of course no one is going to tell you that anti depressants cause tremendous weight gain in an awful lot of people.  I have been stunned by some of what I have seen happen to others, who have taken them for chronic discomfort conditions.  Did you know that the gut is the place where most of the serotonin is produced in the body ?   I haven't seen any studies about the side effect of hormones in birth control pills affecting the function of the intestines, but those things caused me some pretty weird gastro symptoms decades ago, and I stopped taking them because of that. (pity I didn't think thru and get tested further, but the blood test may have been negative for me anyway, and then I would have been tagged as an IBS victim. )   Do the blood test and then figure out what to do next.  If positive, get a referral to a different gastro doctor.  If negative, you might be non celiac gluten intolerant, aka NCGF, and can do a trial of a gluten free diet to see if it relieves your symptoms.   All of these doctors are more interested in the insurance company reimbursements than actually diagnosing someone with something treatable these days. 

 

But don't go gluten free before testing, THAT screws up the test results. 

[Erbear289]

Do I need to fast for these blood tests? My GI mailed me the forms for blood test (hopefully it is for all of those you listed). If I get it today I'd like to go after work, but if I need to fast I will need to wait until tomorrow.

 

 

Either one of those doctors can order the testing for you.  It is possible your PCD does not know what to order; these are the tests:

 

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

 

The first two tests can be safely omitted; they are the older tests and least sensitive.  All the others are important, especially the Deamidated Gliadin Peptide, being the most specific and sensitive for celiac.  And the last test is a control which validates the others. 

 

Give your doctor this list and tell her that the GI has requested that you have the testing done before he sees you.  Do not go gluten free until you have finished with all testing for celiac as it can affect whether your results are positive or negative.

 

I never bothered with allergy testing.  It sometimes helps after you have given up gluten to figure out different things  you are intolerant to.  Right now, you need to find out if you have an autoimmune reaction to gluten, which allergy testing will not pick up.  Allergy testing is totally separate from celiac testing and not affected by gluten.  You can be both allergic to wheat and autoimmune to wheat, by the way.  

 

If your doctor says you have dermatitis herpetiformis, that in and of itself is a diagnosis of celiac disease, being the skin form of it.  It is a very itchy, stinging rash which can drive you mad.  It usually leaves scars.  There is a section of the forum devoted to it with a photo bank of pictures for comparison with your own.

 

Best wishes in getting a diagnosis, and welcome to the forum.

[kareng]

Do I need to fast for these blood tests? My GI mailed me the forms for blood test (hopefully it is for all of those you listed). If I get it today I'd like to go after work, but if I need to fast I will need to wait until tomorrow.

I don't think so but you could call the lab and ask. I'm remembering I had to fast, but that was for the cholesterol test they drew blood for at the same time.

[Erbear289]

Ugh this is getting so frustrating! My stomach isn't in as much pain the last two days but I am SO bloated. Only in my stomach. Literally up 10 pounds from when I had my colonoscopy last Wednesday. There is no way I eat enough to gain 10 pounds. I primarily eat fruits and vegetables, and one regular meal....occasionally a dessert or a splurge.

[pricklypear1971]

If you are gaining 10 lbs in one week you need extensive thyroid testing.

Hashimotos/tpo antibodies

Free t3

Free t4

Total t3/t4

Reverse t3 for baseline

Tsh - not worth much but idiot docs want it

If your doc won't order those you can order them yourself from online labs - same lab, just an online service gives you the order. Ditto for Celiac blood testing.

Yes, Celiac can make you bloat and gain, but thyroid is most likely culprit at that rate of gain.

You need testing for both. And lots of people have both conditions.

[Erbear289]

FINALLY got my blood test script faxed to lab today, the GI only ordered:

Anti-Endomysial IgA

Anti-tissue Transglucamase IgA

Is this going to give any accurate view of what is going on?

I'm also scheduled for a trans-vaginal ultrasound on May 10th to further look into the bloating/abdominal pain.

Either one of those doctors can order the testing for you. It is possible your PCD does not know what to order; these are the tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The first two tests can be safely omitted; they are the older tests and least sensitive. All the others are important, especially the Deamidated Gliadin Peptide, being the most specific and sensitive for celiac. And the last test is a control which validates the others.

Give your doctor this list and tell her that the GI has requested that you have the testing done before he sees you. Do not go gluten free until you have finished with all testing for celiac as it can affect whether your results are positive or negative.

I never bothered with allergy testing. It sometimes helps after you have given up gluten to figure out different things you are intolerant to. Right now, you need to find out if you have an autoimmune reaction to gluten, which allergy testing will not pick up. Allergy testing is totally separate from celiac testing and not affected by gluten. You can be both allergic to wheat and autoimmune to wheat, by the way.

If your doctor says you have dermatitis herpetiformis, that in and of itself is a diagnosis of celiac disease, being the skin form of it. It is a very itchy, stinging rash which can drive you mad. It usually leaves scars. There is a section of the forum devoted to it with a photo bank of pictures for comparison with your own.

Best wishes in getting a diagnosis, and welcome to the forum.

[taynichaf]

I know, it sucks..but keep eating gluten! You can get a test within like a week, so just wait..and even after that you'd probably want to keep eating it incase you want an endoscopy. And then of everything comes back negative just consider yourself gluten intolerant and don't eat it!