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SAHM2one

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SAHM2one Contributor
SAHM2one
Posted

Here are my symptoms.

Seizures as a child

Anemic since birth

low ferritin

low B12

intestinal bleeds until I had my gastric bypass

severe stomach pains

told I had IBS

told I had fibromyalgia

canker sores

joint pain

red blotchy face

Get sick very easy

always tired

leg cramps

irritable

depression

headaches

can't sleep

I had both my gall bladder and appendix removed because of severe stomach pains. I have had an intestinal blockage and a gastric bypass also.

i was tested today for celiac disease by my request and will be going to Duke Hospital in NC on Thursday to see a Hematologist because of the anemia.

In your opinion does this sound like it could be celiac disease to you??

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darlindeb25 Collaborator
darlindeb25
Posted

Your symptoms fit, it's great you have been tested, you will soon know for sure. Celiac's are foten diagnosed with several other issues before the link to celiac is even thought about. I wish they would think of it first, rule it out, then go on...that would make things so much easier.

Good luck with your tests!

ravenwoodglass Mentor
ravenwoodglass
Posted

Sounds like a good possibility. Do remember that AFTER you have done all the testing you desire to do that no matter what the results you should do a dietary trial of the diet to see if it helps. This should be done no matter what the test results say, there are many false negatives on testing so do give the diet a shot. Just be sure to wait until after testing is done to try as the gluten-free diet will impact the testing results. The diet will not effect test results for any disorders other than celiac so if they tell you the celiac tests were negative you have nothing to lose with the trial but the pain.

SAHM2one Contributor
SAHM2one
Posted
  • Author

Thank you. I have started to already look into a gluten free diet. Once I have been tested ,and if I am positive my son has been tested, then my family is going gluten free no matter what.

I just ate a bagel and 5 minutes after I ate I was in the bathroom. Since I started to pay attention to what I eat, I notice that this happens a lot after I eat foods that are high in gluten.

Should have my blood results back tomorrow or Friday.

  • 4 years later...
floral Newbie
floral
Posted

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

kareng Grand Master
kareng
Posted

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

FYI, The Op hasn't been on this forum in 3 years

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      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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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      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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