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Gluten Intolerant. Now What?

dbhickma

By dbhickma
in Coping with Celiac Disease

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dbhickma Rookie
dbhickma
Posted

I've been diagnosed with IBS, spastic colon, acid reflux disease, and an over active gallbladder (chronic D) by a GI. I had an ultrasound of my stomach etc, but there was so much gas in there the tech had a hard time seeing. Never had a "retake." Blood test came back borderline. The last GI I saw asked me where I was from. I said Mexico. To which he replied, You don't look Mexican, if you're Mexican you definitely don't have Celiac. Really? I didn't know if I should slap the man on his head or drop kick him. NEVER WENT BACK.

I've been diagnosed with fatty liver even though I limit my oil consumption to a tablespoon a day and eat as low fat as I can. I work out at least 3 days a week. Every other part of me loses weight except my stomach, which makes me look like I'm pregnant. I don't drink, smoke or do drugs. Anemia, eczema, frequent kidney infections, hipoglicemia, extreme exhaustion (I have 3 kids,) and depression by a general Dr. I'm glad that I didn't end up having Autoimmune Hepatitis like they originally thought.

My OBGYN told me to up my water intake because of frequent bladder infections. At one point a Gyno thought I might have uterine cancer.

I've tried to stay gluten free for months, but keep getting cc. I am the only gluten free in my house and I have little kids so there is MAJOR potential for cc. Took a recent trip with the hubbie and had major CC somewhere along the way. MAJOR reaction. So bad my husband who thought I was a hypochondriac asked me to see a Dr. SO, my dilemma!

I'm SO dizzy and have major brain fog. My grammar skills and spelling have tanked through the years so I wonder if I'm some how brain damaged and to what extent. Do I see a neurologist?

My joints have hurt on a consistent basis my whole life and my knuckles swell on and off. Do I see a rheumatologist?

Is there ONE Dr. that can help me with all this or do I have to keep seeing different Drs for different things and pray they can collectively heal me?

Is there a GOOD Dr on Maui or Oahu for that matter!! I'm at a loss. Please help me out.

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JenniLu Newbie
JenniLu
Posted

I've been reading the book (free download) from this doctor and I'm thinking maybe getting tested this summer. He seems to be very thorough with his testing and looks at all of the symptoms together....but I'm no expert. I like the idea of "functional" medicine anyway. He is out of Minnesota, but he can consult and order the tests long distance.

Open Original Shared Link

JenniLu Newbie
JenniLu
Posted

I just wrote a post on the autoimmune book. Here is the website for the Upper Room in Minneapolis, where Dr. Conner, the functional doctor has his office and there is more information there: Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

What you really need to do is to get strictly gluten free. I know it's hard but that is your answer. You may need to make the house gluten free to do that but your health is more important than the kids having cheerios. It won't hurt the rest of the family to be gluten free in the home and will help you end your pain.

dbhickma Rookie
dbhickma
Posted
  • Author

I talked to my hubbie about it and I told him he could get his gluten fix when he's at work. He eat's out all the time because of his job so he shouldn't have a hard time with being gluten free at home. My kids are just going to have to eat what I make for them. I'm cleaning my house out this weekend. Thanks you guys!

eatmeat4good Enthusiast
eatmeat4good
Posted

Good for you sweetie! And the kids won't even mind after a while.

I hope you feel better soon.

nmthommy Rookie
nmthommy
Posted

go to enteroLab www.enterolab.com

they do stool tests which are far better than blood tests.

My blood work for gluten came back fine but my stool test came back highly sensitive and I found out that I inherited it from both my parents and am passing it on to my boys. : (

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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