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Please Advise!

isitreally

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isitreally Newbie
isitreally
Posted

I'm going to try to make this short, but I already know it will be long - so I'll apologize in advance. I'm not even sure where to start so I'll work backwards from today...

I saw my MD, who runs a holistic practice today to discuss test results from last week and last year. The most recent tests were ran because my 8yo daughter has what looks like exczema from head to toe (literally) and nothing has helped. Last year I had many tests run because of some life long issues that had gotten worse in the last couple of years and here's what the tests showed:

gliadin IgG 3 U/ml (<11 negative)

gliadin IgA 23 U/ml (>17 positive)

transglut IgA <3 U/ml (<5 negative)

She also ran a complete nutritional evaluation and found I was:

Extremely deficient in all B vitamins, vitamin D, Folate, Magnesium

There were also many markers that pointed to inflammation, other issues related to vitamin deficiencies, and some pre-diabetic markers

But last year, she basically said I was very allergic to gluten, and needed these particular vitamins - so go home, don't eat gluten and take these supplements. I did, and I felt better (long list of symptoms below subsided) - but I was not very careful and thought since I don't have celiac, I didn't have to be....so I'm certain that I have never been completely gluten free.

Then comes the daughter's rash (both children seem to have reactions to gluten - but this has been the worst so far)....and the holidays, where I ended up staying for an extended time with relatives and did not want to "inconvenience" them with preparing gluten free foods....so I had lots of gluten - and now feel like crap again (I had actually forgotten how bad I felt!)...

So today I went to talk about the latest round of tests (simple food allergy tests) and had some much more specific questions about the gluten "allergy"...she said that for all intents and purposes, I had celiac and should behave like it. If I wanted to have the DNA tests she would do it, but given all my symptoms and their improvement with simply reducing my gluten intake - I should see remarkable results with eliminating gluten.

She did not think I should have the endoscopic test, as she believes my nutrition tests prove malabsorption...

Okay, so for some reason, I STILL am thinking perhaps I don't have celiac and I'm just being dramatic or looking for something....can anyone advise me about whether I should go ahead and do a gluten challenge to have my villi tested, or just move on???

Here are the symptoms I have had most of which showed up after a terribly rough pregnancy with my daughter:

Life-long stomach issues (was diagnosed with anxiety and pre-ulcers in high school)

Diarrhea/constipation (off and on and alternating)

migraines to the point of vomiting (2-3 times per month - completely gone this past year)

recurring iron deficient anemia (very severe with pregnancy)

anxiety

depression

lethargy (have been tested too many times for thyroid problems)

nausea often

hair loss

serious memory issues (which cleared up when gluten was reduced - like a different life)

easily bruised

sores in mouth (usually 1x per month)

puffyness/bloating

numbness in hands

weight gain and difficulty losing

gall bladder issues - which I fought successfully with flushes for a couple of years but eventually had to have it out

I also had a recurring rash on my hands, very itchy, bumps that looked like pimples full of clear liquid - but I never associated it with anything and never had it tested

And finally.....

My brother had non-Hodgkin's lymphoma.....My grandmother is seriously obese and spent most of her life in bed...my grandfather has Alzheimer's...lots of things like that in my family..

Okay, so I know this probably looks very obvious to those who know what they are talking about, but there is so much conflicting information about the blood tests I'm still wondering...Thoughts? Advice?

Thanks for your time and advice in advance!

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mushroom Proficient
mushroom
Posted

Most of us here feel the same way as your doctor. It makes no difference if you are positive or negative on the tests for celiac; celiac or gluten intolerance, the symptoms are the same, the results of eating it are the same, the improvement on the diet is the same: for want of a label, would you continue to poison yourself?? Suppose the endoscopic biopsies were negative?? Would you still continue to eat gluten and feel bad? You did have a positive IGA result even if the others were negative. It seems like your children are possibly having gluten problems and that it runs in the family. I would just consider myself to be gluten free from this day forward, and get my children tested. But then again, I am self-diagnosed so I may feel differently about things than you do.

isitreally Newbie
isitreally
Posted
  • Author

Thank you Mushroom!

jny1179 Newbie
jny1179
Posted

Sounds like Celiac, that rash on your hands sounds like Dermatitis Herpetiformis which is the Celiac rash. Plus all your other symptoms, the malabsorption, the positive IgA, the feeling better off gluten. Do yourself a favor and stick with the gluten-free diet!! And put your children on it too. Your life will be so much better!

OptimisticMom42 Apprentice
OptimisticMom42
Posted

My mother's family is riddled with celiacs in denial. My mom's sister died of intestinal cancer at age 39. I know this is harsh but gluten can kill you. Stop eating it, stop feeding it to your kids.

Squidge Newbie
Squidge
Posted

My mother's family is riddled with celiacs in denial. My mom's sister died of intestinal cancer at age 39. I know this is harsh but gluten can kill you. Stop eating it, stop feeding it to your kids.

I have to agree. And as far as your doctor calling it a severe allergy, NEVER assume that it is okay to have even a little bit of something you are severely allergic to. Allergies can and do kill often enough. Furthermore, severe allergies can get worse with every exposure. Also, a severe gluten allergy can cause all the symptoms you listed, including the raised gliadin antibody. Both Celiac's and allergies are autoimmune diseases, and thus can raise levels of certain antibodies. However, it doesn't matter if it is Celiac's or not. You cannot eat gluten and remain healthy either way. Actually be careful, for your sake and your children's.

isitreally Newbie
isitreally
Posted
  • Author

Thanks you guys for taking the time to share your thoughts. This is really very surreal because I know what I would say if someone were telling ME all of these things...and I really don't understand why I'm not accepting it (even as I am eliminating gluten as fast as I can from every area of my life).

Thanks for the advice and candor!

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      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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