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missj

Constipation!

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How long before I can expect to start going on my own without aid??? I would love to hear other peoples experience on this.

Agreed! I have had C for as long as I can remember! It is painful and uncomfortable and I'm sure everyone understands where I am coming from! I have been gluten free for a week and still take mirolax...I feel like it makes me go but I don't feel like it's productive (still bloated and feel like I have to go afterwards). Anyone else get this?

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Wow - this is very interesting. I have had constipation most of my life....... but then every month or so I would have an attack of bad D with bad cramps. I don't have that happen anymore, and I seem to be a little more regular than i ever was. But I get bloated a lot. (I am not eating gluten free yet. I am just in the stage of wondering if this could possibly be my problem. I have a lot of joint and bone stiffness and pain, and a rheumatologist once wondered if i might have celiac disease.) I have read the testing for it can be false negative or false positive? Do any of you have any suggestions?? What kind of testing have you had done? Right now I am also looking into having surgery on a parathyroid, but i am concerned maybe I have celiac disease instead of the parathyroid.

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For years I've had C then D then a few days of C, etc. I always thought it was just me. I was either C or going multiple times a day. My docs never thought that was enough reason to test me for gluten/celiac until I specifically asked for it.

Now that I'm going gluten-free, I've been C, but I think my system will stabilize and just needs a little time. (It hasn't even been 3 weeks.)

Speaking of the first paragraph, can I say that I'm kind of annoyed with the GI doctor (not so much my general practicioner) who in January kind of acted like everything must be in my head since all tests came back fine and never even brought up gluten!

What tests did you have? I am wondering what tests to have? I have read that they can be false positive or false negative? Do we ever know for sure?

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What tests did you have? I am wondering what tests to have? I have read that they can be false positive or false negative? Do we ever know for sure?

A false positive on celiac blood work rarely occurs; false negatives happen about 20% of the time. Nevertheless, the correct place to start is with the blood work. The full celiac panel is considered to be:

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

Many doctors like to just order the tTG and total serum IgA, but you can be negative on all tests except one and still get a good positive on that one test, most likely the EMA or the DGP, so I would ask your doctor to run the complete panel. Sometimes they will demur because of insurance issues (the panel is not cheap) but hold your ground and if you have to pick one I would choose the DGP or the EMA. The total serum IgA is run as a control to make sure you produce normal amounts of antibodies. If you don't they have to run the IgG versions of all tests.

Do we ever know for sure? Well, it depends on your definition of "knowing" :P After the blood tests, if there is any indication that gluten could be a problem for you the doctor will normally order an endoscopy with biopsies of the small intestine. If there is positive blood work and damage to the small intestine, doctors will "know" and diagnose you with celiac. It is when the tests do not come back positive that the nagging question of "knowing" comes in. At this point the best recommendation is to do a trial of the gluten free diet and see if it helps you. If it does, you "know" that gluten is a problem for you, whether you have diagnosable celiac or not. And if it doesn't help all the way? You may have some other intolerances along with gluten, as many of us do, and you will have further detective work to do to find out what they are.

Good luck to you in your testing. :)

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I used to have D.

After eating some foods I'd get "hurricane gut" with rumbling and gurgling and knew I'd better get to where a potty was near by. :o

It became worse after a colo/rectal cancer surgery where most of my rectum was removed. That means I have no "storage tank". Normal for me became going numerous times a day, small amounts.

If I ate something with a good dose of MSG or some other foods(never made the gluten connection)I'd get D so bad that sometimes I couldn't make it to the potty in time. It was humiliating to me to have an accident.

Then..about 2 years ago I went on cholesterol medicine. My D changed to a mix of C and normal. It was like magic!

Now if I get glutened I have an urgent need to go..but usually not loose. Much better. I hope I never have to go off the med.

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If there is positive blood work and damage to the small intestine, doctors will "know" and diagnose you with celiac.

This was actually not true in my case. I was given an endoscopy because of positive blood work (IGA I believe...not 100% sure bc the doctor didn't explain anything to me...) and the endoscopy showed some flattened villi, biopsies done on the intestine (again for what IDK) and they said they were negative. I have changed Drs in the meantime and and attempting gluten-free (and crossing lactose off of the list of things I can eat next week bc I am finding that when I eat my yogurt with lunch I because VERY bloated. When I got rid of lactose alone it didn't do much, perhaps the combination will alleviate the constipation?!)

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Are you saying that the doctor "saw" flattened villi through the endoscope but that the biopsies were negative? It sounds like (and this is a good practice always :rolleyes: ) you need to get copies of the reports on your blood work and biopsies so that you (and we - we would like to know) know what we are dealing with. Could you do that for us and post the results?

At any rate, if you have damaged your villi you will not digest lactose well, and if you eliminate dairy and gluten both you should see some improvement. Lelt's hope so :)

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Are you saying that the doctor "saw" flattened villi through the endoscope but that the biopsies were negative? It sounds like (and this is a good practice always :rolleyes: ) you need to get copies of the reports on your blood work and biopsies so that you (and we - we would like to know) know what we are dealing with. Could you do that for us and post the results?

At any rate, if you have damaged your villi you will not digest lactose well, and if you eliminate dairy and gluten both you should see some improvement. Lelt's hope so :)

The doctor told me after the procedure (and I have verified with my bf on numerous occasions bc he was there and I wanted to be sure that I wasn't misinterpreting anything) that there was some flattening of the villi and it was patchy. He gave me a packet on celiac disease as I was leaving the office. Naturally, I assume I have celiac until I get a phone call stating that all of the biopsies they performed (including one on a spot on my esphogus that nobody told me about until the follow-up appointment) were negative indicating I did not have celiac. During the follow-up the nurse practitioner (who I saw bc the doctor's schedule was about two 1/2 days a week......sorry I am getting a little angry!)did not seem to see any note about the flattened villi the doctor performing the procedure stated he had seen.

The original lab was for TRANSGLUTAMINASE AB, IGA: 39 (Range 0-19)and IGA 149 (Range 70-400)

The second lab I haven't received a copy (new doctor have a follow up next month)when I spoke with him on the phone he said it was slightly elevated, I didn't get a specific number or what exactly was slightly elevated.

As for the actual procedure I received a copy of the pathology report which states that the duodenum, gastric and esophagus/gastroesophageal junction show no significant abnormality.

Is there something else I should have requested a copy of? I asked for a copy of blood work and results from the procedure...I was confused as why it stated nothing about the flattened patchy villi and requested all records be transferred to my new dr.

So frustrating!!!!

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Does sit say how many biopsy samples they took? The doctor was right when he said that damage can be patchy, and part of the diagnosis depends on the doctor's skill in taking the samples from the right places. If it were ba enough that he could see it with the naked eye, then he must have missed sampling the damaged areas. Andl you have not talked to the doctor who did the procedure since he told you you have celiac disease? The phone call was fromthe NP or somebody else? Yes, that is very frustrating indeed. :angry: Perhaps you could get a copy of his office notes, or schedule an appointment specifically with him and not the NP to discuss this confusion.

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Does sit say how many biopsy samples they took? The doctor was right when he said that damage can be patchy, and part of the diagnosis depends on the doctor's skill in taking the samples from the right places. If it were ba enough that he could see it with the naked eye, then he must have missed sampling the damaged areas. Andl you have not talked to the doctor who did the procedure since he told you you have celiac disease? The phone call was fromthe NP or somebody else? Yes, that is very frustrating indeed. :angry: Perhaps you could get a copy of his office notes, or schedule an appointment specifically with him and not the NP to discuss this confusion.

6 samples from the duodenum, 3 from the gastric biopsy, and four of the esophagus.

I have not talked to the Doctor that did the procedure. His hours were very limited as were mine bc I was working three jobs. I followed up with the NP bc of time restraints. I had all of my records released to the new gastro so when I see him in two weeks or so I can ask if he released the procedure notes to him and what they said. To be honest if I don't have to deal with the old office I do not want to.

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