Could This Be Celiac?

[CarolynA]

I am a 62 year old woman who has been having severe diarrhea and stomach cramps for 2 weeks. The diarrhea usually wakes me up at night and I go from 2 to 4 times during the night, then a couple of times in the morning with stomach cramps for a long time afterward.

I was tested for celiac about 8 years ago with negative results, and I also had a colonoscopy and endoscopy 1 1/2 years ago with normal results. I also have hypothyroid and migraine headaches which can be related to celiac disease.

Does this sound like it could be celiac disease? I am going to call my doctor first thing tomorrow morning, but was wondering if I should call my internist or my gastroenterologist who I haven't seen in a long time?

I have reading many of the forum posts, and this community seems very knowledgeable. Any advice would certainly be appreciated as I am daily getting weaker and more fatigued.

Thank you,

Carolyn

[squirmingitch]

Carolyn, it certainly sounds possible. I'm curious as to why they did a celiac test on you 8 years ago? Were you having problems then? I think I would try calling the doc who decided to test you for celiac previously.

[CarolynA]

Carolyn, it certainly sounds possible. I'm curious as to why they did a celiac test on you 8 years ago? Were you having problems then? I think I would try calling the doc who decided to test you for celiac previously.

Thank you for asking, and, in fact, I had forgotten about it. I had a colonoscopy at that time because I was anemic. The doctor found gastritis which was causing the anemia and tested for celiac, but the test was negative. I was not concerned and assumed that the testing was just routine. I had had some bouts of "irritable bowel", but it would always resolve in a few days. Now I am beginning to think the doctor might have seen some damage at that time. I will call him in the morning, but I don't know how quickly they can see me. I might be able to see my internist quicker, and he can order the tests.

[squirmingitch]

Have you been tested for the anemia since? And did it resolve? When were you last tested for anemia?

MAKE SURE YOU DO NOT GO GLUTEN FREE UNTIL ALL TESTING HAS BEEN COMPLETED!!!!!!! I can not stress the importance of this strong enough. There are enough false negatives as it stands. You want the best chance so keep eating gluten.

Also, it would be helpful if you could get a copy of all the test results with ref. ranges & the reports for the endoscopy & post them here. We have people on the board who are very adept at reading them. Also, the FULL celiac panel may not have been done on you the first time --- it happens all too often! And then, many docs don't know how to interpret them. It would be important to know also if there were any biopsies taken during the endo & if they were screened specifically for celiac disease.

Make sure your doc orders ALL of these tests as this is currently the FULL celiac panel:

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 DGP test was added recently to the full panel.

Also, tell us what other health problems you have --- such as thyroid problems or other autoimmune diseases as well as your blood relatives. Especially if anyone has diabetes or celiac disease. We would be looking for diseases commonly related to celiac.

When was your thyroid last checked & I'm not talking about just the TSH. Have you had vitamin levels checked lately?

[CarolynA]

Have you been tested for the anemia since? And did it resolve? When were you last tested for anemia?

MAKE SURE YOU DO NOT GO GLUTEN FREE UNTIL ALL TESTING HAS BEEN COMPLETED!!!!!!! I can not stress the importance of this strong enough. There are enough false negatives as it stands. You want the best chance so keep eating gluten.

Also, it would be helpful if you could get a copy of all the test results with ref. ranges & the reports for the endoscopy & post them here. We have people on the board who are very adept at reading them. Also, the FULL celiac panel may not have been done on you the first time --- it happens all too often! And then, many docs don't know how to interpret them. It would be important to know also if there were any biopsies taken during the endo & if they were screened specifically for celiac disease.

Make sure your doc orders ALL of these tests as this is currently the FULL celiac panel:

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 DGP test was added recently to the full panel.

Also, tell us what other health problems you have --- such as thyroid problems or other autoimmune diseases as well as your blood relatives. Especially if anyone has diabetes or celiac disease. We would be looking for diseases commonly related to celiac.

When was your thyroid last checked & I'm not talking about just the TSH. Have you had vitamin levels checked lately?

Thank you so much!! I have an appointment this afternoon with my GI doc. I printed out your list and will tell him to order all of them. Also, while I am there, I will get the old results.

I will look for my thyroid labs later, but I know the doctor has only been checking TSH lately. Last month it was 4 and he just bumped up my levothyroxine from 100 to 112 mcg. My mother had Type II diabetes, and I know my maternal grandmother died of "stomach cancer", but that was in the 1930's and the diagnosis might be questionable. My sister had rheumatoid arthritis from the age of 18 years.

The anemia, which actually happened twice, was due to a very slow bleed. The second time it happened, my doctor put me on daily omeprazole, and it did resolve. Last month my Hemoglobin was 14.

I will post later after my appointment when I have more info. I am really impressed with the amount of help the veteran people are giving the newbies on this forum!

[squirmingitch]

Carolyn, I'm still learning myself. And since I have dh (the skin rash of celiac) I have a bit of a different situation & since I'm gluten-free & NOT ABOUT to gluten myself for testing then some things I am not proficient in --- such as interpreting your test results. But there are those on here who are amazingly knowledgeable so we will get them here looking at things for you at some point.

However, I can say that your family history certainly speaks of higher possibilities of celiac disease.

Let us know what happens at the doc.

[CarolynA]

Carolyn, I'm still learning myself. And since I have dh (the skin rash of celiac) I have a bit of a different situation & since I'm gluten-free & NOT ABOUT to gluten myself for testing then some things I am not proficient in --- such as interpreting your test results. But there are those on here who are amazingly knowledgeable so we will get them here looking at things for you at some point.

However, I can say that your family history certainly speaks of higher possibilities of celiac disease.

Let us know what happens at the doc.

Dear squirmingitch, the doctor wants to test me for C. Diff., parasites, and fecal WBC before proceeding further. He seems sure I have irritable bowel instead of celiac only because celiac is much more rare. He wants me to take Metamucil and a probiotic, Align, in the meantime to see if that helps because he said I could be "out of balance." He also said in 2004 that they did a biopsy for celiac which was negative, but they never did any blood tests. He said the next step is another colonoscopy if I am not better in one month, which I am not really happy about. I will get the stool sample to the lab in the morning, then I will have to wait for those results. I will report what I find out. Thanks so much in the meantime.

[bartfull]

Celiac is much more rare than IBS because there are so many stupid doctors out there who are too lazy to test for Celiac, too incompetent to do and READ the tests properly, or too "holier than thou" to allow you to question their NON-diagnosis.

And IBS is NOT a diagnosis. It is a cop-out.

[CarolynA]

Celiac is much more rare than IBS because there are so many stupid doctors out there who are too lazy to test for Celiac, too incompetent to do and READ the tests properly, or too "holier than thou" to allow you to question their NON-diagnosis.

And IBS is NOT a diagnosis. It is a cop-out.

/quote]

I felt the same way, but it is hard not to be intimidated in their offices. He really didn't want to hear about celiac, and more than once told me that 95% of people have irritable bowel. I will wait for the results from the stool sample until I figure out how to proceed.

[squirmingitch]

A biopsy for celiac. W/O blood for celiac. Biopsies need to be a bare minimum of 8. Celaic is 1 in 133. That isn't all that rare. I wish I had a dime for every celiac misdiagnosed with IBS. I would be rich as a Rockerfeller!

It upsets me.

I think you may need to look for a new doc Carolyn. Did you know that the new protocol for dxing celiac doesn't even require an endoscopy if certain things turn up positive in the blood panel?

Open Original Shared Link

[IrishHeart]

Your symptoms shout gluten intolerance to me.

Get tested, please.

Tell your doctor Celiac is not "rare" anymore.

1 in 133 people have it.

Let me throw this at you, too.

Open Original Shared Link

[squirmingitch]

Carolyn, please read this & especially the portion under "Screening". As follows:

Screening

Although celiac disease is fairly common, is underdiagnosed, and can lead to serious complications, mass screening is not yet recommended. Screening with EMA and tTG may be warranted in patients with high risk factors, notably first-degree relatives of patients with the disease.

Open Original Shared Link

Perhaps you should print it out & highlight pertinent parts & take it to your doc.

You know, the doc could easily do the celiac panel on you at the same time he is doing this other stuff. Sort of like --- why prolong the dx, why hunt & peck, let's just get all the tests done at one time & get to the bottom of this whole thing. Just b/c they did a biopsy in 2004 & it was neg. does not mean that you will never have celiac disease. My goodness! That was 8 years ago. They are acting like if you get tested once in your life & do not have it then that's IT --- you will NEVER have it. Shortsighted.

[CarolynA]

Carolyn, please read this & especially the portion under "Screening". As follows:

Screening

Although celiac disease is fairly common, is underdiagnosed, and can lead to serious complications, mass screening is not yet recommended. Screening with EMA and tTG may be warranted in patients with high risk factors, notably first-degree relatives of patients with the disease.

Open Original Shared Link

Perhaps you should print it out & highlight pertinent parts & take it to your doc.

You know, the doc could easily do the celiac panel on you at the same time he is doing this other stuff. Sort of like --- why prolong the dx, why hunt & peck, let's just get all the tests done at one time & get to the bottom of this whole thing. Just b/c they did a biopsy in 2004 & it was neg. does not mean that you will never have celiac disease. My goodness! That was 8 years ago. They are acting like if you get tested once in your life & do not have it then that's IT --- you will NEVER have it. Shortsighted.

I read both of the links from Squirmingitch and IrishHeart. I was especially impressed by the Cleveland Clinic's advice that anyone with irritable bowel and and thyroid disease should be tested. All of you have certainly boosted my knowledge level and confidence!

I just called both my internist and my GI doc and left messages insisting on the blood tests for celiac. I will go with whichever one can get me in first. I am still having the same number of diarrhea episodes, but the cramps are reduced and the movements are less watery. That could be due to the probiotic and Metamucil.

I turned in the stool sample yesterday and have no results yet. However, since I have no fever, chills, or blood in the stools, I don't think C. Diff. is a factor.

I will keep all of you updated on the developments.

Thanks,

Carolyn

[squirmingitch]

Terrific Carolyn! I was a little worried we (I) had offended you but that is never our intent. It's just that stuff like what happened to you happens all the time! IrishHeart herself went through doc after doc after doc & dx after dx after dx for years! And she darn near died from celiac disease! And I'm NOT exaggerating! Many here have similar stories. It's a recurring theme. And while docs twiddle their thumbs & test for everything else the patient, if they have celiac disease, continue to do damage to their intestines & their entire body.

Hang in there.

[IrishHeart]

I turned in the stool sample yesterday and have no results yet. However, since I have no fever, chills, or blood in the stools, I don't think C. Diff. is a factor.

If he wants to do all those tests IN ADDITION to the Celiac testing, that's great! I know a few celiacs with microscopic colitis and c.diff, so it is wise to rule it out/cover all the bases. When I finally found a doc who knew what the hell he was doing, he ran all those tests and more because long un-DXED celiac disease can create MORE problems and affect every organ, every body system, and even lymphoma. So, no harm in having extra tests run, IMHO.

Keep us posted! We care.

[CarolynA]

If he wants to do all those tests IN ADDITION to the Celiac testing, that's great! I know a few celiacs with microscopic colitis and c.diff, so it is wise to rule it out/cover all the bases. When I finally found a doc who knew what the hell he was doing, he ran all those tests and more because long un-DXED celiac disease can create MORE problems and affect every organ, every body system, and even lymphoma. So, no harm in having extra tests run, IMHO.

Keep us posted! We care.

I just wanted to give you an update that the stool sample was negative for C.Diff, parasites, and WBC. The GI doc did agree to the celiac panel, and I just got back from the lab. I was feeling much better yesterday and thought it was resolving. However, today I had stomach cramps all morning. The doctor said I should now go gluten-free, but it will take me a few days to figure out what to eat. I expect the results by Tuesday, at least. I will keep you posted.

[squirmingitch]

Whoa there Carolyn! Caution. The GI doc said you should now go gluten free? What if he wants to do an endoscopy after he gets the celiac panel back? If you're gluten-free then that gets screwed up. And did he do the FULL panel?

I'm just saying about the going gluten-free thing ---- think about it first. Lots of docs just really don't know & don't tell their patients that they have to be eating the equivalent of 4 slices of bread per day even for the endoscopy.

Is he willing to dx on blood work alone? What if the blood is not indicative enough for him? Then he'll want to do an endoscopy.

[IrishHeart]

I think you should stay ON GLUTEN in case he wants to do a biopsy!!

When you are ready to begin your gluten-free life, here is some info to get your started:

[CarolynA]

I think you should stay ON GLUTEN in case he wants to do a biopsy!!

When you are ready to begin your gluten-free life, here is some info to get your started:

OK, I will wait to start gluten-free, but I am sure all of you know that is extremely difficult because I want to feel better. I was in somewhat of a dilemma, though, because my husband made a beautiful, large, tabbouleh salad yesterday, and I didn't have the heart to throw it away. So, now, dilemma is solved. I will eat and try to be patient.

Thanks so much for the advice!

[CarolynA]

Whoa there Carolyn! Caution. The GI doc said you should now go gluten free? What if he wants to do an endoscopy after he gets the celiac panel back? If you're gluten-free then that gets screwed up. And did he do the FULL panel?

I'm just saying about the going gluten-free thing ---- think about it first. Lots of docs just really don't know & don't tell their patients that they have to be eating the equivalent of 4 slices of bread per day even for the endoscopy.

Is he willing to dx on blood work alone? What if the blood is not indicative enough for him? Then he'll want to do an endoscopy.

His nurse assured me it was the full panel. Your list had 6 items and theirs had 5. I asked specifically about DGP, and she said it was on the list. I will go into the office next and get a copy of the results and post.

[CarolynA]

His nurse assured me it was the full panel. Your list had 6 items and theirs had 5. I asked specifically about DGP, and she said it was on the list. I will go into the office next and get a copy of the results and post.

Well, I just got my blood results back:

IgA 214 reference range: 68-378

TTG 8 0-19

IgG 3 0-19

The nurse last week told me they were doing the full panel, and I saw 5 tests on the order. When I asked about that today, the nurse told me they only do the others if the first 3 are positive. So, they are all negative, and I and feeling better besides. The 2 week bout of diarrhea and stomach cramps seems to have resolved. The tests say I don't have celiac, but I still could have a sensitivity to gluten. I am not sure, but possibly, the probiotic and Metamucil got me back in balance

[squirmingitch]

I am glad to hear that Carolyn! Good news right?! Yes, you could still have a sensitivity to gluten so if things get bad again then you know what to do & this board is for gluten sensitive people too so don't hesitate if you need help.

Wishing you great health Carolyn!

[frieze]

Well, I just got my blood results back:

IgA 214 reference range: 68-378

TTG 8 0-19

IgG 3 0-19

The nurse last week told me they were doing the full panel, and I saw 5 tests on the order. When I asked about that today, the nurse told me they only do the others if the first 3 are positive. So, they are all negative, and I and feeling better besides. The 2 week bout of diarrhea and stomach cramps seems to have resolved. The tests say I don't have celiac, but I still could have a sensitivity to gluten. I am not sure, but possibly, the probiotic and Metamucil got me back in balance

This makes no sense, they did a serum IgA, but give you reports on IgG.....and no report on the deaminated IgG.....in other words they are lying to you, if you want to fight with them to get the full testing, give it a try, otherwise i wouold find new doc, I certainly would have trouble ever trusting this office again.

[CarolynA]

This makes no sense, they did a serum IgA, but give you reports on IgG.....and no report on the deaminated IgG.....in other words they are lying to you, if you want to fight with them to get the full testing, give it a try, otherwise i wouold find new doc, I certainly would have trouble ever trusting this office again.

I just wanted to post an update on my progress over the past year.  After my tests turned out negative, I went back to my regular diet and forgot about gluten.  However, the neuropathy in my feet has been getting worse, and my doctor increased my levothyroxine dosage last summer.  I have turned to acupuncture in an attempt to get some help.  For a few weeks, the neuropathy was getting better, but the in the last 2 weeks, the pain has gotten much stronger than ever before.

 

I just started reading a book, The Immune System Recovery Plan, by Susan Blum.  She says that thyroid disease, neuropathy, and celiac disease are strongly associated.  "The thyroid, joints, and nervous system are damaged first, and this can be the initial sign that something is amiss, before any symptoms of celiac disease are evident."  This is really astounding information to me! 

 

She suggests going off gluten, corn, dairy, and soy for 3 weeks, then adding them back in one at a time.  Have any of you had success doing this and finding the cause of the problem?  Have you seen neuropathy get better through an elimination diet?  Any comments?  

[squirmingitch]

I've seen my neuropathy improve greatly being gluten free.