Need Advice For My Symptoms

[Sunshine Sassie]

Hi guys, I am excited to post on this forum and talk to people who are feeling like I do! To make a (long) story short I'll give the rundown of my symptoms. I've always had difficulty with constipation (never will get the urge) but in the last two years it progressively has gotten so bad it has controlled my life. I have been able to get it somewhat under control with different methods and medications but in April I started experiencing new symptoms:

 

• Extreme abdominal bloating
• Pain in the intestines (mostly when and while I am eating and after having a bowel movement)
• Bruised feeling in the intestines
• Joint pain (in hips)
• Loss of period
• Undigested food in stool
• The middle part of my stomach always, always sticks out in a weird shape. (I can only tell this when I'm not bloated which isn't very often)

I lost ten pounds rapidly last year and am underweight but I believe I lost the weight due to my constipation. I never wanted to eat because I knew it wouldn't come out lol I have gained 6 pounds since with no problems.

 

I have had blood taken and am not anemic or vitamin deficient.

 

I've had a stomach x-ray and all they could tell me was I was really, really backed up (no surprise with my constipation problems).

 

I just received insurance and my doctor is scheduling me for a colonoscopy

 

Which brings me to today; I just got blood tested for Celiac. I have been going on and off gluten for a month and a half now and am wondering if it will affect my results. In May I stopped eating gluten and all of my new symptoms I have listed above disappeared completely! When I got married I ate gluten my wedding day and honeymoon and it felt like someone had kicked me 100 times in my stomach. However the bloating (which is my main symptom) did not appear until five days after eating gluten so I was confused. Since then I have been yo-yo ing back and forth trying to see if gluten is the culprit.

 

Any comments would be much appreciated

 

 

[nvsmom]

Being off and on gluten could affect your results - if it is positive I guess it will be a moot point.    Let us know when your results come it. Hopefully they ran a bunch and not just a tTG IgA.

 

When you are in for your colonoscopy, could you have the endoscopic biopsy for celiac disease done at the same time?  It might be worth checking into rather than having to go back to get the celiac testing done later.

 

Those are celiac symptoms so I think testing is a good idea. If all tests are negative, it might be worth trying the gluten-free diet anyways as the blood tests are NOT fool proof, and non-celiac gluten sensitivity (NCGS), which is much more common than celiac disease, could be causing your problems.

 

Good luck!  

[NatureChick]

I would totally expect that symptoms could be delayed.

Back in the day, before I figured out that gluten was my problem food, I had been unconsciously avoiding gluten in my own cooking for years. It wasn't until I had an injury and couldn't get to the grocery store, eating gluten-filled take-away food for a couple meals a day when limping to work, that I started having major problems again. But the worst of my symptoms built up over a couple of months. 

Granted, I was still having problems all along because I wasn't 100% gluten free back then, but my worst reactions to increased amounts of gluten didn't happen overnight.

I've only had a full-on dose of gluten once since going gluten free and my symptoms seemed to build and then lessen over the course of a few weeks. Every day for the first week after, I seemed to have a different one of my old symptom arise, taking turns so to speak. And though those reactions weren't as bad as when gluten was a part of my daily diet, I did have a new symptom that was much worse - overall body pain that can only be described as feeling arthritic all over, and that lasted for weeks.

But just one accidental glutening did not send me back to the same level of digestive reaction that I was having when consuming gluten every day. So when they say it takes weeks for those doing a gluten challenge to build up the reactions needed for accurate testing, I totally know what they mean.

I'm crossing my fingers for you that you do get positive test results so that you don't have to do a gluten challenge in order to get a definitive and official diagnosis. But your fears are correct that being gluten-free the majority of the past month and a half could affect your results. 

If you do end up with negative results and decide that you want to do a gluten challenge to get more accurate testing, do it now. Putting it off until later when you have gotten better at being gluten free could make it much more difficult as reactions are known to become stronger the longer you have been gluten free. But either way, it sounds as if you already know that gluten is a problem for you. 

[Sunshine Sassie]

Thank you so much to nvsmom and NatureChick for taking time to give me some insight for my symptoms. Your advice really brightened my day and it is very helpful to hear the opinions of other's who are more advanced on this topic than myself.

 

I have continued to eat gluten free and feel like a new person. I do not feel like a person who has anything wrong with them anymore. This is how I felt after my first elimination of gluten experiment.

 

That being said I received my blood test results today and they were negative. I am not sure what specific tests they ran. The doctor said food allergy test and Celiac Panel. I see a GI in late July and will request if I can have an endoscopic biopsy done when my colonoscopy is performed.

 

So should I start eating gluten again? I just so tired of being sick I am sure almost everyone on this forum can relate to this feeling. I really just can't believe how much better I feel and if this is the answer to my symptoms I never want to go back again!. Although it is important for me to have a proper diagnosis because a gluten free diet is a full time commitment and I do not want to change my lifestyle this dramatically if it is not needed. Regardless if I have Celiac Disease or a gluten intolerance, I have a newfound respect for everyone who must avoid gluten. It is hard all the way around.

[nvsmom]

If you can, get a hold of your results and share here - not all doctors are great at interpreting tests so an extra set of eyes might help.

 

If you are sure your blood tests are done, then you could go gluten-free for a while.  The full celiac disease panel includes the tTG IgA and IgG, DGP IgA and IgG, EMA IgA, and total serum IgA. If you only had one test run, you might want to do more, in which case don't go gluten-free yet.  If most test were run, then you could probably go gluten-light... I don't know if it would be in your best interests to go gluten-free before seeing the GI. Perhaps call his office and see what he says?  Many GI's will want to re-run the celiac disease tests, in which case you will need to still be eating gluten.  

 

I'm guessing you can cut down on gluten but if there is more testing coming, you'll want to keep it in your diet.

 

If you do change your diet, keep a food and symptom journal and share that with your GI when you see him.

 

Best wishes.  

[Sunshine Sassie]

Thank you nvsmom for more advice on what to do next I called the doctor today and asked what specific blood tests I had done. She started going through the list and when I asked her about the Celiac she said that it came back abnormal so they ran more tests to see if I had Hepatitis; which was negative. When I asked what it meant for the Celiac test to be abnormal she just said they only tested me for it to make sure my liver was functioning correctly and went on to ask me if I was taking any kind of medication every day. I take erythromycin (antibiotic) twice daily for the side effect of speeding up my system to get the urge to have a bowel movement (I suffer from chronic, chronic constipation.)

 

I would love your advice on what an abnormal test result means. I am confused why they told me all of my tests were negative. I wanted to ask what specific Celiac test they performed like you recommended but I felt like she misunderstood how concerned I was about Celiac and continued to talk about my constipation and medication. I am not very forward so it is not her fault but I may stop by and get my results on paper.

[nvsmom]

Your doctor's office is not doing a good job of communicating with you. . I think you might be like me and experience stress (to the point of confusion - for me) when you see the doctor. Perhaps get a hard copy of the labs to read? I know that having a copy of the lab to look at really helps me think.

I do not know why a celiac test would show liver function unless they are referring to the tTG IgA which can (rarely) have a weak false positive in those with chronic liver disease, among other things. I would try to get clear what they were talking about.

Normally an abnormal celiac test means you have celiac disease. In about 5% of positives, the results can be caused by other problems, but usually it is celiac.

Being on antibiotics all the time does nt sound like a good thing either. Chronic constipation was one of my problems too. Things could get backed up for days - I know it is no fun. 9 months on the gluten-free diet as well as finally treating my hypothyroidism properly, finally cleared that up. You might want to be checked for hypothyroidism too - it is commonly found among celacs.

Good luck with the doctor!

[Sunshine Sassie]

Hello again I went to the doctor today to get my print out of blood work results and it did help me understand them better but unfortunately I became confused once again.

 

Celiac Panel 10   RESULTS ABNORMAL CLASS

 

IgA                                                68 mg/dL   LOW                  (Reference Range 69-380)

 

Endomysial Screen                     Negative

 

tTG Ab, IgA                                     1.7 U/mL

 

Gliadin Peptide Ab, IgG                  3.0 U/mL

 

Gliadin Peptide Ab, IgA                  1.5 U/mL

 

tTG Ab, IgG                                    4.9 U/mL

 

 

Reference Range:

<20 Negative

20-25 Equivocal

>25 Positive

 

It appears to me that the only thing abnormal was my IgA level was too low (I'm trying to understand how that can skew the whole Celiac Panel). Although the reference range next to it says 69-380 so if I would have been one point higher it would have been normal? I'm also keeping in mind that I was not consistently eating gluten before being tested

[nvsmom]

5% of celiacs are deficient in Serum (blood) IgA, which is more than in the regular population.  Immunoglobulin A (IgA) is a part of our immune system found in the mucosal linings (mouth, gut, etc). The celiac tests (as I understand it) measure the inappropriate immune response that occurs when a celiac eats gluten over time.  If that part of the immune system is lacking, the blood tests will not be able to detect enough auto-antibodies (in your case tTG IgA and DGP IgA) to make a positive test result.

 

Ummm, think of it like painting a wall.  The IgA is the actual white paint that you would start out with, and and the auto-antibodies are the colour tinting that would make the paint red, blue, or whatever.  Let's say the tTG IgA is a red tint, and the DGP IgA is blue.  If you are deficient in IgA (white paint) you will never be able to paint a whole room red or blue even if you add the colours. You'll maybe be able to paint a small corner of the wall and that's not enough to make an impact... or be detected in blood tests.  LOL  This analogy of mine is lame.  

 

Low IgA will not skew the results of the DGP IgG or the tTG IgG as those are IgG based - a system wide part of the immune system. Being low in IgG would mess up those results but that is not common.

 

The DGP IG is a very good test. The tTG IgG is not the most reliable and can miss over half of all celiacs.  Here is some info on the tests:

Open Original Shared Link

Open Original Shared Link

 

Right now your tests look negative, but if you strongly suspect celiac disease, then you might want to ask for the endoscopic biopsy or retest after doing a gluten challenge (8-12 weeks of 1-2 slices of bread per day, or equivalent) . Make sure they take a good 6 samples, and keep eating gluten until testing is done.

 

Hang in there.

[GFinDC]

Hi,

 

Another thing to consider and make sure the doctor understands also is that your symptoms improved after cutting down gluten.  There has to be a reason for that to happen.  Plus you had symptoms start after eating gluten.  Our bodies can tell us quite a bit about the foods they are ok with vs the ones that cause a problem.  They tend to say "don't eat that again!" for foods that are a problem.  It's worth listening to your body as much as it is worth listening to a doctor and some tests.