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Frustrated

oceanmelissa

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oceanmelissa Newbie
oceanmelissa
Posted

Hello,

My name is Melissa and I am 31 years old, for the past 12 years or so, I have been struggling with constant stomach issues. I have the following chronic issues: nausea, loose stools, stomach pains, bloating, migraines and loss of monthly periods. I do suffer from cysts on my ovaries - PCOS. I have had almost every test done under the sun over the years and have been admitted to the hospital several times for what was suspected gull bladder attacks but it has never been removed. I've been told over the years that I have IBS, Fatty Liver, Acid Reflux - you name it I'm sure its been told to me. I've even been described once in the hospital as a "medical mystery". Recently, my neice has been diagnosed with biposy positive Celiac Disease which made me start to wonder more about my issues possibly could be Celiac related. I started the process of investigating with the routine blood test which came back negative and my levels were so low that my doctor said they would never grant an invasive test like a stomach biposy for someone exhibiting such low levels. I've just decided that starting December 1st I am going to begin eliminating wheat from my diet to see how I'm feeling.Without going into explicit details, I was wondering if anyone out there experienced anything like this? I just want to start feeling better sooner than later and I'm at my wits end and feel like this is the final step and if I dont start feeling better than what?? I'd appreciate any feed back from anyone.

Thanks,

Melissa

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Marilyn R Community Regular
Marilyn R
Posted

Hi Melissa, and welcome to the forum! :)

I am undiagnosed but went gluten-free because I was literally at witts end with medical and psychological issues, none of which correlate with what you've gone through.

I'm feeling so much better, but it took awhile, and there were some ups and downs.

It can't hurt you going gluten-free, so try it and see! It sounds like you're heading down the right road to me.

oceanmelissa Newbie
oceanmelissa
Posted
  • Author

Hi Melissa, and welcome to the forum! :)

I am undiagnosed but went gluten-free because I was literally at witts end with medical and psychological issues, none of which correlate with what you've gone through.

I'm feeling so much better, but it took awhile, and there were some ups and downs.

It can't hurt you going gluten-free, so try it and see! It sounds like you're heading down the right road to me.

Hi Marilyn,

Thanks for your positive words of encouragement, what have you found to be the biggest challenge for you so far in going gluten free??

Metoo Enthusiast
Metoo
Posted

I am undiagnosed also, but after years of excruciating stomach pain, I had a negative blood test ...and my doctor much like your said no doctor would do the biopsy since I don't have severe symptoms. (I have an aunt and 3 cousins recently diagnosed)

So 4 weeks ago I went gluten free...I feel 80% better! Like I had no idea how bad I felt until the last week. I am going to test gluten again in a few weeks to see if I can get stomach pain again...but Thanksgiving I realized what a Full Stomach was supposed to feel like...there wasn't any pain! I have a lot more energy and everything is just so clear! It's weird!

I am keeping a food journal for 3 months also so when I go see my doctor I have some evidence for him...but at this point it's getting hard to imagine ever going back to gluten. I just feel so good finally!

Di2011 Enthusiast
Di2011
Posted

Hi Melissa and welcome.

I'm not diagnosed celiac but do have (undiagnosed) DH which is clearing from being gluten-free.

Your symptoms are very similar to other members of this forum. And you are genetically much more likely to develop or have celiac (I think the stat is 1 in 22 if you have close relatives diagnosed). If, as you seem to suggest, you don't need an official diagnosis then go gluten free today!!

I have had a long list of issues that have resolved these past six months of being gluten-free, many of which I thought were "normal" or just because I was lazy/unhealthy/miserable. I no longer have bloat/constipation, week long heavy periods, hyperglycemia (I didn't even know this word until it stopped and I read about it on this forum!), brainfog, weight is now near normal (I was overweight most of my lifetime) etc etc etc.

I hope gluten-free helps you as it has for me. It took me months to get my food intake right (I can't handle much of any processed food, even gluten-free). When I went gluten-free it seemed like any food didn't go down very well. It can be tough but stick with it. Everyones recovery/response is different so be patient and get on here to read/educate yourself. You are welcome to rant :)

oceanmelissa Newbie
oceanmelissa
Posted
  • Author

So I am on day 4 now and I cannot believe how great I feel already!!! I have sooo much more energy, my chronic nausea is GONE, no more stomach pains and I don't feel tired and I even sleep better - the strangest thing was after 1 day of no wheat I got a period and I have not had one in a year!! They always said it was PCOS! I can't believe I am 31 and now can finally feel better!!!!!

Di2011 Enthusiast
Di2011
Posted

Sounds like you are going to have a good recovery.

Welcome to the gluten-free club :)

Keep reading. And watch out for mistakes and tempations. Don't hesitate to get on here if you have any hiccups along the way. This forum has been a saviour many times for me.

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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