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So Frustrated Just Want To Give Up On This...ughh Experts Advise Please!


bekkaz

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bekkaz Apprentice

I won't get into my extremely long story but I have been having ongoing stomach issues that started back in Nov.  Before that for as long as I can remember my stomach would swell up after I would eat, and I would like 4-5 months pregnant.  I had two endoscopies, showing erosive gastritis, I had a colonoscopy showing mild inflammation.  My celiac biopsy's and blood tests came back negative.  I tested myself with enterolab, came up positive.  I cut gluten, my stomach continued to really bother me.  I was put on anxiety pills saying that it would also help with my stomach issues.  I had other blood tests done, skin prick tests, etc.  I came up positive on one blood prick test, with needles on my back to Soy, Corn, Chicken, Egg and Dairy.  The next time I had it done on the arm with the little plastic type needles...came up positive to nothing.  Begged the Dr. to do an IGG blood test, they sent that test through Mayo, Mayo sent it to Viacor.  It came back 15x higher than normal to dairy.  These Dr's that I am seeing aren't that serious about these tests.  A naturopath Dr. I seen did some stool testing and found some bacteria's, that I read are part of the normal gut flora, but mine was just really high.  She rx'd me 30 days of Cirpofloxin.  I started feeling somewhat better and started "cheating" and messing with gluten again about 3 weeks ago.  My stomach is slowly starting to bother me again, I am getting that same acid burning feeling and am SCARED TO DEATH to go through this stomach pain again.  I lost 30 lbs in a month and a half.  I am vitamin D deficient,  I have fat malabsorbtion issues, and am not breaking down vegetable fibers either.  I am so frustrated because I just want to know WHAT FOOD IS BOTHERING ME.  Is it freaking gluten, is it dairy or what is it.  I am beyond frustrated, I don't want to cut both of these out if not needed.  I am confused on how to do an elimination diet right to figure this out.  I am really desperate for help and advice.  Honestly, gluten would be easier for me to cut than diary.  While on gluten-free and still eating dairy I was still having some symptoms of the bloating with dairy.  How can I tell what I am reacting to?!?


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1desperateladysaved Proficient

Welcome Bekkaz,

 

I am hoping you figure out what is ailing you.  It does sound like gluten problems is a strong possibility.  You seemed to have had a positive diet trial.  I think you should get tested for celiac.  You must be eating gluten for the testing.  Someone will likely list the tests for it to help you know which ones.  When it is done go gluten free.  It sounds likely you should go dairy free right away.

 

Going dairy free is easy.  I should know, as I have been totally dairy free since I removed butter a few months back and milk free for at least a year.   Instead of dairy milk one can use coconut milk, nut milk, or rice milk.  You likely can get gluten free non dairy milk at a store near you.  Instead of butter one can use coconut oil, nut butter, or olive oil.  You can learn to enjoy these things.

 

Ice cream sub:  One can coconut milk, 2 tablespoons honey, 20 frozen strawberries or other frozen fruit.  Whirl in blender.  Wooola, soft serve Ice cream. 

 

New Veggie:  Fennel bulb.  It is good for digestion it has a light licorice flavor.  You can find it in the produce section.  It sort of looks like an onion bulb with green feathery plumage.  Slice and steam or stir fry it.

 

You can find subs, right now you need to do what you know to do.  I think you can, because I have done it.

 

Get well, Get well, that stomach pain doesn't sound like anything to put up with.  ***

 

D

notme Experienced

have you tried using a food journal?  may help identify what is causing you problems.  also, if the rx was ciprofloxican, it's an antibiotic and will probably kill all the 'good' digestive bugs you need in your gut, as well as any infection your doc thinks you have (?) side effects include the big D and nausea.  you might want to add a probiotic to help re-populate your good gut bacteria.  (it takes a minute for your body to get used to taking it every day - sounded like there was a party going on in my intestines the first week or so LOLZ)  i use a food journal combined with (boringggggggg) elimination diet when something just ain't right and i can't figure it out. 

w8in4dave Community Regular

When you say this :" I started feeling somewhat better and started "cheating" and messing with gluten again about 3 weeks ago.  My stomach is slowly starting to bother me again, I am getting that same acid burning feeling and am SCARED TO DEATH to go through this stomach pain again"  Sounds like you already know what it is ..... 

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    • trents
      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
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      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
      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
      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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