Contradictory Symptoms & Tests

[kiddo88]

Alright.

For about 9 years now (since I was 15) I have always had SO much gas, (sorry, maybe tmi)cramping, pain, bloating and my stomach is constantly swollen. If I got nervous I would need to go to the bathroom IMMEDIATELY. I have an ulcer (in the deuodenum ((sp?)) diagnosed when I was 20 via upper endo) along with IBS (which I truly believe is a catch all). When I had my upper endo the doc took a biopsy, and all they told me was that it tested fine. Would they normally test for celiac or even gluten intolerance? When I went to a doctor that said she ran "a battery of tests", some of which I know included autoimmune- is it likely that she would have tested for celiac? Do celiacs produce ANA's like other autoimmunes. I'm also still unclear whether Celiac is an auto or not.

Moving on. The day before yesterday I decided to cut out gluten. I did well (simi well) all day, but at night ate 2 honey buns. I got gassy. BAD. Fast foward to yesterday. Ate all gluten free. I noticed that I felt a lot better! No brain fog (even after ADHD meds wore off!) wasn't nearly as dizzy, no visual disturbances (like floater things...?) Then something crazy happened! I went to take a shower and was washing off and.....um, where did my belly go?!?! It is always swollen! ALWAYS. It was like, deflated. I told my hubby to come in and said do you see anything different about my stomach and he said "Its.....deflated....?" So later, I gave hubby a kiss goodnight. About 30 minutes later I had a small amount of bloating and A LOT of gas. I felt icky.

After my son was born is the only time I remember my stomach being like this! I chalked that up to having to eat VERY well (I had very *very carb sensitive gestational diabetes..yes, at 18 years old) and to my PCOS going in remission while I was pregnant.

I have done a lot of looking into other illnesses that can be caused or worsened by GI or celiac disease. Here is what I have that I think might match;

-Infertility (diagnosed as PCOS, but o.b. says its no reason for no pd in my case as its not severe that they know of)

-Secondary Ammenorhea

-Mouth Sores (including 2 pimple like things on my gums and other random appearing sores. thought they were from smoking before i quit- but i still get them)

-ADHD

-Anxiety Disorder

-Panic Disorder

-Depression

-Duodenum ulcer

-Joint pain

-Sleep disturbances

-Hypothyroidism (although this is very genetic in my family. Great grandmother, grandmother, me and little sister all have it.)

Also, does anyone know if this makes you have frequent "bladder infections" and "uti's" only to test positive for leukocytes but almost always negative for nitrites. And* the cultures come back negative. Could this be related?

I'm sure there is more that I just can't think of.

So even though tests MAY have said no, is this still a possibility? Should I pursue a diagnosis or just take it for what it is and say I'm GI? Since there is really no cure or meds or anything is there really a point in putting myself through eating gluten again to get tested?

Thank you all for answering!

[shadowicewolf]

Well, i'd get tested now. It would be easier to go back on gluten as you are right now, then it would be to stay off it for months then get tested.

[GottaSki]

When I had my upper endo the doc took a biopsy, and all they told me was that it tested fine. Would they normally test for celiac or even gluten intolerance? When I went to a doctor that said she ran "a battery of tests", some of which I know included autoimmune- is it likely that she would have tested for celiac? Do celiacs produce ANA's like other autoimmunes. I'm also still unclear whether Celiac is an auto or not.

Welcome!

No, an endoscopy does not normally include biopsies for Celiac Disease. Not all GIs have experience with Celiac Disease - it is best to look for one that is actively treating patients with Celiac.

No, blood tests for Celiac Disease are NOT often among blood tests run - I had autoimmune tests done repeatedly for decades because of symptoms - no doctor ever suggested Celiac Disease until I was 43. The only autoimmune test I had that wasn't "normal" was ANA (results worsened with each decade) - docs dismissed this because all tests for inflammation were "normal".

Yes, Celiac Disease is an autoimmune disease - meaning your body generates antibodies because of an immune response to substances and tissues normally found in the body.

While you can remove gluten without testing and you will likely feel much better - there are many reasons to get tested. Here are two important reasons:

First - if you have Celiac Disease the tiniest particles of gluten can cause the immune reaction and further damage. If you have not been diagnosed it can be tough to remain 100% compliant while healing - especially if you have bloating, other gastro symptoms - it can take quite a while to heal completely and there are times you will second guess if gluten is the problem if you have similar symptoms while gluten-free.

Second - it is important to monitor Celiac Disease with annual blood work to make sure you are not accidentally ingesting gluten and to make sure nutritional deficiences caused by the malabsorption of nutrients in Celiac are addressed.

I highly suggest getting the blood tests of a full celiac panel along with vitamins/minerals done ASAP. If you decide to remove gluten, you lose the opportunity to obtain this data that may become very important to you in the future.

Should all Celiac tests come back negative, you may still have Non-Celiac Gluten Intolerance. The treatment for both NCGI and Celiac Disease is identical -- completely removing ALL gluten.

Good Luck to you

[mushroom]

Welcome to the board, kiddo

Celiac is not automatically on a GI's list when he does an endoscopy; in fact some have to have there arms twisted to put it on the list. Even if it was on the list and he did a celiac biopsy, one is not enough; the disease does not appear uniformly and it is easy to miss, thus it is recommended that at least six be taken.

Celiacs do not produce ANA's to gluten, they produce autoimmune gliadin antibodies. There is a panel of celiac tests to measure these antibodies.

If you have only in the last couple of days stopped eating gluten you can have the celiac panel run and it will still be valid. Your primary care doctor can order these tests:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide) IgA and IgG
  
• Total serum IgA

If you can, you should continue to eat gluten, because if your tests are positive they will probably want to order an endoscopy to check for damage. It is, of course, up to you whether you consent to this procedure.

Whatever the testing results, you should of course give the gluten free diet a good 3-6 month trial with the symptoms and results you have experienced.

[kiddo88]

Welcome!

No, an endoscopy does not normally include biopsies for Celiac Disease. Not all GIs have experience with Celiac Disease - it is best to look for one that is actively treating patients with Celiac.

No, blood tests for Celiac Disease are NOT often among blood tests run - I had autoimmune tests done repeatedly for decades because of symptoms - no doctor ever suggested Celiac Disease until I was 43. The only autoimmune test I had that wasn't "normal" was ANA (results worsened with each decade) - docs dismissed this because all tests for inflammation were "normal".

Yes, Celiac Disease is an autoimmune disease - meaning your body generates antibodies because of an immune response to substances and tissues normally found in the body.

While you can remove gluten without testing and you will likely feel much better - there are many reasons to get tested. Here are two important reasons:

First - if you have Celiac Disease the tiniest particles of gluten can cause the immune reaction and further damage. If you have not been diagnosed it can be tough to remain 100% compliant while healing - especially if you have bloating, other gastro symptoms - it can take quite a while to heal completely and there are times you will second guess if gluten is the problem if you have similar symptoms while gluten-free.

Second - it is important to monitor Celiac Disease with annual blood work to make sure you are not accidentally ingesting gluten and to make sure nutritional deficiences caused by the malabsorption of nutrients in Celiac are addressed.

I highly suggest getting the blood tests of a full celiac panel along with vitamins/minerals done ASAP. If you decide to remove gluten, you lose the opportunity to obtain this data that may become very important to you in the future.

Should all Celiac tests come back negative, you may still have Non-Celiac Gluten Intolerance. The treatment for both NCGI and Celiac Disease is identical -- completely removing ALL gluten.

Good Luck to you

Thank you! Lots of good info!

[kiddo88]

Welcome to the board, kiddo

Celiac is not automatically on a GI's list when he does an endoscopy; in fact some have to have there arms twisted to put it on the list. Even if it was on the list and he did a celiac biopsy, one is not enough; the disease does not appear uniformly and it is easy to miss, thus it is recommended that at least six be taken.

Celiacs do not produce ANA's to gluten, they produce autoimmune gliadin antibodies. There is a panel of celiac tests to measure these antibodies.

If you have only in the last couple of days stopped eating gluten you can have the celiac panel run and it will still be valid. Your primary care doctor can order these tests:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide) IgA and IgG
  
• Total serum IgA

If you can, you should continue to eat gluten, because if your tests are positive they will probably want to order an endoscopy to check for damage. It is, of course, up to you whether you consent to this procedure.

Whatever the testing results, you should of course give the gluten free diet a good 3-6 month trial with the symptoms and results you have experienced.

Okay, good to know! So now I'm at a loss. I feel so much better, I don't want to eat gluten again. I was all excited about it, but now I feel like poo realizing that it's MORE tests. I FEEL like I have been a pin cushion since I was 15 If I ate gluten for 24 years (literally, my mom breast fed and she ate gluten....) will it really all go away in a couple weeks? I have an apt with the allergist on the 3rd of October. Is that too long of a time to not eat gluten and it still show up? Also, do these tests check for GI or just celiac disease? If they are negative, could I still be GI?

[GottaSki]

You have to be ingesting gluten in order to produce the antibodies measured in the blood work. The problem is that some of us have very weak positive blood results, so any reduction of gluten can change your results - if you have borderline antibody levels in your blood, the reduction will cause negative result - which can make an already difficult diangosis process even more ambiguous.

Your primary doctor can order the tests that mushroom recommended - a telephone call on Monday explaining the positive improvement you had to removing gluten along with the fact that the removing gluten can drastically effect your results should be enough for the primary to place the order for blood -- please understand that many doctors are not familiar with Celiac Blood tests - if you have online messaging or email with your doctor - that can be a great way to ask for the specific tests and spell out the reason for the rush.

If any of the tests are positive, you will need to be seen by a GI that has Celiac experience.

I know it may seem rediculous to continue to eat something that you know is making you ill - we've just seen too many people go gluten-free because the discover the connection to their symptoms only to regret not having the tests done before removing gluten.

Take a look at any website of the major Celiac Centers: University of Chicago, University of Maryland, Mayo, UCSD - they'll all confirm the necessity to keep gluten in the diet until testing is complete.

Keep reading - it is good to be well informed regarding Celiac testing - unfortunately many doctors are not.

[mushroom]

Unfortunately, Lisa is right. The antibodies can disappear quite quickly in the absence of gluten. There is no way of knowing if yours will or not. Since you have eaten gluten for 24 years, can you hang in there for a few more days?

I am assuming here that you do want to try for a diagnosis. If the diagnosis is not important to you then by all means there is nothing to stop you from quitting gluten now, so long as you won't second guess yourself somewhere down the road a ways.

At the moment there is no test to measure non-celiac gluten intolerance. It is a diagnosis made on the basis that you were not positive on celiac testing but have resolution of your symptoms by removing gluten from your diet. In fact, until recently NCGI was not even recognized by doctors or researchers, so there is little research on the subject.

[kiddo88]

I understand its important to keep eating it, just not happy about it.

I'm going to request the blood work next Friday or Saturday. Would it be enough to start eating gluten again, like a day or 2 before? Or does it need to be continuous?

Is it really important to have a celiac disease diagnosis? Does that change a lot of things?

Also I have been on google looking up upper endo pictures of people with celiac (and duodenal ulcers) and comparing them with mine, as I still have my pictures from 2009. I can't for the LIFE of me figure out what I'm looking at. Anyone have a good bit of experience in this? I KNOW there is an ulcer on there, and I have it narrowed down to 2 things in the pictures. LOL But I'm not completely sure which one- but I think I know. I have no idea even where to begin in looking for signs of celiac. The pictures weren't much help as they were all different and used very huge medical terms.

[mushroom]

No, gluten loading right before testing does not cut the mustard. The consumption should be continuous

Whether or not you need a diagnosis is entirely up to you. I do not have one, in fact I gave up consulting doctors for my food intolerances and just use my PCP to order the tests I think I need which she is happy to do.

Many people find that without the piece of paper that says "celiac" that they start wondering if gluten really was/is their problem. You have to consider how religiously you would stick to gluten free without a diagnosis.

For younger ones in school it can be really important to have the right accommodations made during their education to keep them gluten free (gluten products used in schoolwork, class treats, meal plans in college) but for adults as long as you can stick to the diet there are few reasons to need the verification.

In your case you have had batteries of tests for other things so it is not like you are potentially missing another diagnosis (unless, of course, your symptoms do not resolve). And there is a downside, in that some health and life insurers react negatively to a celiac diagnosis.

As far as your endo pictures are concerned, most celiac damage is only visible under microscope

[kiddo88]

No, gluten loading right before testing does not cut the mustard.

Shooooooooooooot.

Many people find that without the piece of paper that says "celiac" that they start wondering if gluten really was/is their problem.

I could see myself doing this, but I feel SO much better. It would be awesome to have a concrete answer though....

For younger ones in school it can be really important

Absolutely!

In your case you have had batteries of tests for other things so it is not like you are potentially missing another diagnosis

Ya never know- but I can't imagine what they would have missed.

some health and life insurers react negatively to a celiac diagnosis.

What do you mean by this? Like they would drop us? Or what?

As far as your endo pictures are concerned, most celiac damage is only visible under microscope

Darn it. The only odd thing i see is the ulcer and a rash like thing....

[mushroom]

Leukocytes (white blood cells) are used by your body to fight infection. With a negative culture it is really difficult to say what they are doing in your urine What does your doctor say?

[kiddo88]

Leukocytes (white blood cells) are used by your body to fight infection. With a negative culture it is really difficult to say what they are doing in your urine What does your doctor say?

Right, they are used to fight infection. But, sometimes your body will send them when something is just inflamed. For example, interstitial cystitis. So I was wondering if the inflammation in the digestive tract (like celiac) could cause the leukocytes like IC does (which is inflammation of the bladder.) Thought it was worth a look into.

My doctor? Hah. Riiiiiiiight. She has NO* idea.