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New, And Need Advice Please!


little00blondie

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little00blondie Rookie

Hey y'all- I am new to this, and desperatly need help, advice, and experience. My entire life I have had on and off bouts of what we call the "Brown family stomach" (many others have this so-called nervous and sensitive stomach in my family), in which I would have months of diareah, weight loss, illness, etc. at a very young age. However, we never looked into it further. As a teen, I found my menstration cycles so long and painful that I would sometimes have 2 in one month, or one the length of 2 weeks- to the point that a doctor told me I prob. wouldn't be able to have children. A month later, my newlywed husband and I became pregant! (And thankful, of course!)

My baby girl is nearly a year old, and the past month has been hell. My entire pregnancy I was violently ill and could barely put on weight. This past year I have been in and out of doctors with extreme stomach pain, bouts of constipation and diareah, weight loss, stomach destention, bloating and overall discomfort, slight (tiny bit) of depression, and recent bone pain. I was even hospitalized a few times. I have bounced between numerous doctors- all of whom disregard my symptoms as so-called stress, IBS, or "post partum depression." None of the IBS or reflux medicines they gave me worked (and I told them so)

I tested positive for gastritis and stomach iritation during an upper GI series, I was told during an endoscopy that my intestines screamed "celiac", and a nurse technician even went so far as to tell me how "not normal" my intestines appeared during an unrelated vaginal ultrasound. I am so sick of being sick- Im young, the picture of perfect health (a fitness/dance instructor, personal trainer, etc.) as far as lifestyle, and want to be living this new time wiht my child and hubby!

All dr.s have done is say that my stomach looks like celiac, my symptoms seem celiac, and I couldn't agree more. I have no doubt in my mind. However, my biopsy done was negative- although I was not told to eat gluten in the weeks prior (I was eating minimal amounts) and the dr. really seems neglegent about all matters of celiac. He did not explain anything to me at all, and has not returned a call since the biopsy (even after explaining the bad shape that my intestines were in.)

Out of frustration, I have been 100% gluten free this past week (to test things out myself), and already feel like the clouds have slightly parted and there is some sun shining through! Not huge improvement, but enough to have me feeling positive!!!!! I am very bodily aware person

Has anyone had similiar experiences? Everything adds up, but I still am confused? Would appreciate any words of wisdom!!! Thank you!!!! : )


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Lisa Mentor

Hello and welcome to our world.

Since you have had a endo that screamed Celiac and you have had a positive dietary response...my bet is that you have your answer.

I would suggest that you read as much as you can from this board. There are some very dedicated people, informed and very generous in their knowledge with their willingness to share.

Gluten is a tricky monkey to find, because it's every where. Please check you lipsticks, lotions, shampoos or any meds that you might be taking. Anything that can get into your mouth can be subject.

Again, welcome and please feel free to ask. All questions will be answered.

chatycady Explorer

Mammagoose is right! There is tons of information on this sight that is helpful. I started to feel better also, but was still having troubles and then I read on this website, that I may also have lactose intolerance. There is a good article about why lactose may be a problem. Hopefully in a few months I'll be able to eat cheese again. :rolleyes:

Everyone here has a story to tell. I hope you get better so you can enjoy your family!

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    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
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