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Help! Continuing Symptoms

janu

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janu Rookie
janu
Posted

I was tested in Feb. IGA was 11(equivocal) and IGG was 5(neg.) but I had been gluten-free for 2 months. Dr. adjusted my thyroid- I was hypothyroid, increased iron, vit.Dand Calcium. I felt great for about 2months. Now I've started in with symptoms again but have remained gluten-free. I also have 2 daughters with celiac disease. I haven't found a dr. in Cent.Oregon who is knowledgeable about celiac disease. I haven't seen a GI but wonder if I should seek out more testing like the genetic tests or a biopsy. My daughter's GI in Portland suggests strongly she have a biopsy. Her antigliadin panel was positive in all areas. I really feel lost and without good advice. I hope someone has some helpful suggestions. Thanks,

Jan :(

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jknnej Collaborator
jknnej
Posted

Why were you gluten-free in the first place? Were your first tests positive?

What kind of symptoms do you have?

KaitiUSA Enthusiast
KaitiUSA
Posted

I ditto the previous post...that would be helpful to know

If you are in fact celiac then is there a way you could be getting gluten in through makeup or other products you use or are they gluten free to?

If you are 100% gluten free including with products you may want to try a food journal to see if symptoms flare up after any certain food. You may have an intolerance to something else as well. Have you had any sensitivity to milk? That can happen to alot of celiacs, especially at first.

Or there could be something else going on.

Since you have 2 daughters with celiac it is definitely in your family and your whole family should be tested because there are probably others who have it.

If your daughter had positive blood tests and has been gluten free a biopsy would do no good while being on the diet because the damage woud heal and results would be inaccurate. With all positive tests that pretty much concludes she has celiac. Which tests did she have done? There are certain tests which are very specific for celiac. In fact, the tTG test may become a replacement for biopsies for diagnosis in kids...there is an article about that on this site too.

You could get a gene test done. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene. So that could maybe share some insight.

Also, Enterolabs may be an option to look into. They use stool samples to detect malabsorption, gluten sensitivity, gene testing, milk sensitivity, tTG, and so forth. It is not widely accepted by stubborn doctors who have to have it 1 way or its wrong. It is a very good test and I know alot of doctors who do support it.

Good luck

janu Rookie
janu
Posted
  • Author

To answer your question, I was gluten-free because I had given up on medical doctors after years of complaints of abdominal pain, diaharea, migrane type headaches, fatigue, high blood pressure and low back pain. Most of these symptoms didn't have a reasonable explanation for their cause and I was just being given meds to cover up the symptoms. I went to a naturapathic chiropractor and did a d-tox 6 week program and couldn't believe how well I felt after that so when it was over I just continued to stay away from gluten. I gradually added other foods back in but am still avoiding dairy products. I've eliminated a shampoo and hair conditioner that had wheat protein in it and have checked my make up and hair sprays. I'm leaning toward having the Enterolabs panel of tests done sine they claim that being gluten-free for a period of time will still allow a positive test result. I think my daughter should go this direction too instead of the biopsy. Her doctor claims that she needs to see the extent of intestinal damage. Does that make sense? You guys are great in taking the time to answer my questions. I'd like to find a doctor in Central Oregon who is "smart" about celiac disease but so far no luck. Thanks,

Jan :rolleyes:

KaitiUSA Enthusiast
KaitiUSA
Posted

Try looking at the home page of celiac.com and if you scroll down there is a link to recommended doctors by other celiacs. Click on that and then find your state. Maybe there is one around.

I can see that the doctor wants to see what condition her intestine is in..that would be the only reason for the biopsy. I personally don't know if it would be worth it..for me it wouldn't...I would either be lucky and not have damage yet..or have damage...the same course of action would be taken for either result. With her having positive blood results I would find that convincing enough.However, this is a personal decision that should be made.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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