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Gluten Intolerant. Now What?


dbhickma

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dbhickma Rookie

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

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

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

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

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

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

I hope you feel better soon.

nmthommy Rookie

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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    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
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    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
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