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Help, Please!


neylonas

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neylonas Rookie

I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!


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elligal Newbie

Why is Dr. being dismissive? That's not a good quality in a doctor. Sometimes you have to be persistant.

Eriella Explorer

These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

cookie22 Newbie

it sounds to me like you're in the right place. Have you been tested for crohn's and or colitis?

EmmaQ Rookie

Have you ever heard of the Carbohydrate Specific Diet?

I would start there.

The gut needs to be healed to be well.

The Maker's Diet is an interesting read, not sure if I buy it all, but it is good if you have the disipline to give up everything and try dirt to feel well. I think it worked for him, may or may not work for someone else.

ElenaDragon Explorer
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Wow, you just described my symptoms almost exactly! I am 28, female, and was diagnosed with IBS last year. I have been following the Eating for IBS diet on Open Original Shared Link, but my symptoms seem to have only been getting worse. I too have horrible bloating and gas. I am constipated during the day, but after the gas gets through, every morning I have diarrhea as soon as I wake up. For the past month or so I have also been having abdominal pain on both sides (more on the left than the right). My doctor gave me Bentyl for the IBS, and my celiac blood panel came back normal. I've tried Gas-X, and it doesn't do much for me, but I have only taken one at a time.

Gluten being the problem for me seems to make sense. I have already cut out dairy and soy, but gluten has been pretty constant in my diet (although not heavy). I am going to call my doctor's office to find out the details of my blood test results (numbers), and I decided to go ahead and try going gluten free for a while to see if I notice a difference. I've tried so many other things that it's worth a shot! Today is my first day, and so far I feel fine. Not much to go on yet though. :)

Mally-bug Apprentice
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!

Have you tried the gluten free diet? That's what we did - without a dx. We are going through enterolab, but have had really great results with the diet. Give it a try - what can you lose but your symptoms? :rolleyes:


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Mally-bug Apprentice
These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

I am totally new to all of this...have only been on the gluten-free diet for less than a week. So you are saying that there are you can be a non-celiac but still have a gluten intolerance? I am going to try to research it but if you could give me a little insight on that, it would be great. I have also had a very positive dietary response already, but have not had the actual diagnosis yet, so any information you can give is great. thanks...

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    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
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