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More Testing On Tummy Problems

skgirl

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skgirl Newbie
skgirl
Posted

So here is my coles notes story....

I have had bad tummy problems since I can remember but they got really bad at the age of 16. I was a late bloomer almost 15 when puberty hit. Originally I chalked it up to food (mostly meat intollerance) My mother and Grandmother have the same problem. Two years ago I had been getting really bad/sharp stomach pains about 15 mins after eating and it didn't matter what it was. Went to the Dr.'s whom then sent me for blood tests and a colonoscopy (for crohns & colitis) which didn't go well felt every minute of it finally told the Dr. to stop because the pain was unberrable (and I have had 3 kids 1 all natural). When the results had gotten to my GP they said they were inconclusive... hmm i wonder why??? Anyways I had about enough of being poke and prodded at so I stop testing. My friends's new gluten-free (a nurse & celiac) suggested that I go and get tested for Celiac. I went to a new Dr. (i have moved) explained to her the time length and a brief on symptoms and she ordered at wack load of tests pretty much everything on the paper and then some.

Symptoms are:

stomach cramping, diarreah, loss of appitiet, lactose intolorant, I have been anemic for who knows how long, odd menstration (I also have PCOS and a messed up petuitary gland), monster headaches.

I have been paying more attention as of late to what i am eating since there seems to be no consistancy on what causes my stomach discomfort.

I hope that these test will find something or lead to something that may be bothering me so far though if it is something i would prefer celiac to crohns or colitis as it is WAY easier to treat!! Going for my blood tests tomorrow should find out soon....I hope

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skgirl Newbie
skgirl
Posted
  • Author

Dr's got my test results today I only had the tests on Wednesday....WOW I have to go see her next week YAY maybe some answers

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad they got the results so quickly for you. Did they give the results to you? One thing you do want to keep in mind is that false negatives are not uncommon. When you are done with all testing do give the diet a good strict try no matter what the results.

skgirl Newbie
skgirl
Posted
  • Author

I am going to see the Dr. tomorrow morning. I am going to ask for the numbers of the test, I was planing to try the diet even if the numbers are a negative because as I have read on here so much that the test results can be negative, more often then not. I'll post the results tomorrow when I get them.

skgirl Newbie
skgirl
Posted
  • Author

So went to the Doctor the Celiac panel isn't back yet however she told me that in the mean time to go gluten free for at 3-6 months and see how that goes. She will call me when the panel comes back to let me know what it says but she told me the same thing that I have read here in so many posts the "False negatives are extremely common" I also was diagonased with hypoglycemia which if I don't watch it will turn into Diabetes within 5 years.... just one more thing to add to the list. My fathers side is riddled with it and the celiacs would come from my moms side (so I think mom & grandma have major tummy issues) However I talked to my dad and my cousin started with hypoglycemia then turned out he has celiacs....

Dixiebell Contributor
Dixiebell
Posted

I'm sure you have read on here if you plan on having an endoscopy you should continue to eat gluten and then after the endoscopy go gluten free.

ravenwoodglass Mentor
ravenwoodglass
Posted

So went to the Doctor the Celiac panel isn't back yet however she told me that in the mean time to go gluten free for at 3-6 months and see how that goes. She will call me when the panel comes back to let me know what it says but she told me the same thing that I have read here in so many posts the "False negatives are extremely common" I also was diagonased with hypoglycemia which if I don't watch it will turn into Diabetes within 5 years.... just one more thing to add to the list. My fathers side is riddled with it and the celiacs would come from my moms side (so I think mom & grandma have major tummy issues) However I talked to my dad and my cousin started with hypoglycemia then turned out he has celiacs....

It sounds like you have a good doctor. If you have celiac in your family then your chances of having it yourself a pretty good. I hope you have good results from the diet. Ask us any questions you feel you need to. Although it sounds like your doctor is going to be willing to diagnose you based on family history and response to the diet do call and check that she isn't going to want you to have a biopsy. If you go gluten free before the biopsy they won't be able to diagnose you without a gluten challenge.

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skgirl Newbie
skgirl
Posted
  • Author

I don't beleive that she is going to bother with the biopsy...the family history is there and she told me to go ahead with the diet. I am overwhelmed by the hypoglycimia and the celiac but I have a really good book and you all to help me through this and an exremely understanding husband (most important).

Off to the post diagnosis section lol

skgirl Newbie
skgirl
Posted
  • Author

So the panel came back and she told me "two of the tree markers are there so in my opinion you have it, not going to bother with the biopsy but stay on the gluten free diet" so there I go I have been gluten free for just over a week now and feel fabulous already!!

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      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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