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Trying To Figure Out What Is Wrong

greytmom

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greytmom Newbie
greytmom
Posted

Hi everyone. I am a 49 year old female (soon to be 50!) and I have had IBS-D since about 16 or so, fibromyalgia for about 20 years, and I'm starting to wonder about chronic fatigue because I just feel perpetually exhausted. I managed pretty well with the IBS for years, avoiding trigger foods like leafy greens and white flour.

But for the past several years, it seems like everything disagrees with me. I went from having flare-ups every few days to where it is now pretty much constant. I saw my doctor last week and she started me on Librax 3 times a day, but it really isn't doing enough to control the symptoms. It is affecting my work, everything.

When I saw my PCP a month ago and asked her to test me for celiac, she told me she was sure that wasn't it since 1) I am overweight and 2) I had a normal colonoscopy two years ago. But, she agreed to test me, and went over the results with me last week. She told me everything is normal and it's just IBS, and prescribed the Librax.

I asked for a printout of my labs when I left, and looked them over when I got home. Here is what the labs say:

Tissue Transglutaminase AB, IGA

1 U/L (my result)

Value interpretation <4 U/L: no antibody detected

Immunoglobulin A

113 mg/dL (my result)

(81-463) reference range

Gliadin (deamidated) AB (IGA)

6 units (my result)

Value interpretation <20: antibody not detected

Gliadin (deamidated) AB (IGG)

50 units HIGH (my result)

Value interpretation >20: antibody detected

Tissue Transglutaminase AB, IGG

1 U/mL (my result)

Value interpretation <6: no antibody detected

My vitamin levels were low a year ago, so she recommended a multivitamin then, which I have been taking regularly since. Vitamin D was particularly low, so she also recommended extra D, so I do take that as well. Current D level is at 42, reference range 30-100. Surprised me a bit, thought it would be higher with the extra I am taking.

My cholesterol and triglycerides are fantastic, and when I made a comment about well, at least being overweight hadn't affected that, she joked that I must be pooping it all out. So clearly there is an awareness that there is an absorption issue, but she seems content to chalk it all up to stress (30+ years worth!) and write me a prescription.

I'm just frustrated that there don't seem to be any answers. I did go gluten free a few years ago, but didn't do it for very long, although it did help, a little. I just want to KNOW.

Any comments and suggestions will be most welcome. I do take probiotics as well, but they don't seem to make a difference.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Let me put it bluntly.....you need a new doctor.

You have one positive on the panel. Now, you should see a GI doctor for an endoscopy (not a colonoscopy) for a visual and biopsies. Celiac Disease damages the small intestine--not the large. I tested positive on just two of the tests and ended having moderate to severe damage when I had my biopsies done. My total cholesterol always hovered under 120 and I was praised by my doctors. Have since found out that low cholesterol is just as bad as having too high! Since I have been gluten free and have healed, my cholesterol is up to a healthy 176 with triglycerides at 48 and HDL at 61 from 37.

Keep eating gluten until all testing is complete. Go to the University of Chicago's celiac website for more testing information.

I hope you feel better soon.

SMRI Collaborator
SMRI
Posted

Not all Celiacs are underweight...if they were, I'd be a lot skinnier than I am :D.  I agree, get an appointment with a GI dr that specializes in Celiac disease.  Go to Chicago, Mayo Clinic, etc. if you need.  The other thing, your total IgA, while still normal, is on the low end of things and that could alter your TT IgA results some.  

ravenwoodglass Mentor
ravenwoodglass
Posted

The test you are positive on is specific to celiac. Be careful with the Librax as it can have a sedating effect so driving may be impacted. I never found it to be helpful either and it is not something IMHO that should be used long term. It is time to get a second opinion from a different doctor. If your doctor objects it is time to find a new PCP. Keep eating gluten until all your testing is finished and then after testing is done go ahead and get on the diet. 

nvsmom Community Regular
nvsmom
Posted

Oh yeah. That DGP IgG of yours is well over double the normal limit - that is something to take seriously. The DGP IgG is considered to be one of the most specific (to celiac disease) tests out there. A positive result means you have celiac disease 99-100% of the time.  (This is where I got my stats: Open Original Shared Link)  It loos like celiac disease to me too!

 

Low vitamin levels, as well as low cholesterol and triglycerides are common symptoms of celiac disease. My cholesterol and triglycerides were far enough below normal that my doctor is trying (through diet) to raise it some.  LOL

 

I agree with the others that you need to see a GI specialist and eventually go gluten-free.  When you are finally able to go gluten-free (after testing is complete)  make sure you give the diet a few months to help. The first year of recovery is full of ups and downs, and many symptoms may not improve for many months.

 

Welcome to the board.  :)

greytmom Newbie
greytmom
Posted
  • Author

Thank you, everyone... I really appreciate your suggestions and will make an appt. with a gastroenterologist. It's weird... With my dogs I don't hesitate to push back with the vets if I am not comfortable with the info they are giving me! But with me... Another story altogether!

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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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