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Missing The First Time?

randomceliac

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randomceliac Newbie
randomceliac
Posted

I'll try to make this as short as possible! Back 4 years ago, I had a doctor who noticed I had pretty low vitamin levels in my body. He ordered a biopsy to test for celiac's disease, which came back negative. Other than that, I never had any symptoms.

However 3 months ago I started having stomach/intestinal issues. It was a very stressful time; I graduated college and started my first real job. I've had horrible cramping and other unpleasant things happening constantly over the past 3 months...constant pain being almost unbearable. Last week a doctor did a blood test for celiac disease, which came back positive. Now I'm scheduled to get a biopsy (again) to confirm. Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago? FYI I'm a 22 year old male if that's relevant.

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kareng Grand Master
kareng
Posted

Sounds like they didn't do the blood test 4 years ago. Your small intestine is like 22 feet long. Every inch is probably not damaged. They could have missed the damage. Hopefully, they will hit it now. Make sure they do more than 1 biopsy. I have heard that some doc's only take 1 sample. :huh: After your biopsy, go gluten free because you have the positive blood and the pleasant symptoms.

MelindaLee Contributor
MelindaLee
Posted

A friend of mine was recently diagnosed. She said she had a blood test in 2008 which was negative. She's had horrible symptoms, including SEVERE anemia. I don't know. :unsure:

T.H. Community Regular
T.H.
Posted

Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago?

Yup, it definitely is. Celiac Disease can trigger at any time during your life, if you have the genes for it. So it could trigger the day after a negative test and you'd have a positive biopsy a few WEEKS later, sometimes.

However, it's also possible that you have a false negative the first time round, too. False biopsies are not unheard of, especially if you happened to have patchy damage, and they picked the wrong 'patch' to look at.

If I had a positive blood test, after the biopsy, I'd go gluten free for a few months at least,even if it's negative, just to see if it makes me feel better.

randomceliac Newbie
randomceliac
Posted
  • Author

Thank you all so much for your responses. However like I said in my first post, I've had constant non-stop abdominal pain for 3 months now and given the blood test I want to switch to gluten free immediately...but I know you can't until after the biopsy. My question is do I really need a biopsy? Are false positives on blood work common or something? From what I've heard, it seems like the blood work would be more accurate since it sounds like biopsies have just as much chance of being wrong.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you all so much for your responses. However like I said in my first post, I've had constant non-stop abdominal pain for 3 months now and given the blood test I want to switch to gluten free immediately...but I know you can't until after the biopsy. My question is do I really need a biopsy? Are false positives on blood work common or something? From what I've heard, it seems like the blood work would be more accurate since it sounds like biopsies have just as much chance of being wrong.

False postives are very rare in the blood work. False negatives in both blood and biopsy are much more common. The choice of whether to continue on gluten and biopsy is up to you. If you feel you can stay compliant and be strict with the diet without one then go ahead and start the diet. However if at a later date you do decide you want the biopsy you will need to go back to a full gluten diet for a couple of months to damage yourself enough for any chance at an accurate biopsy. Your blood tests and resolution of your issues gluten free are also diagnostic. Read as much as you can here on what you need to do in your home and in restaurants etc to protect yourself and avoid cross contamination.

If you can take it Pepto Bismal may help with the abdominal and stomach pain but some have great relief very quickly from the diet. Do avoid dairy at first to heal the fastest and go with whole unprocessed foods while you are healing. If you live near a Wegmans they label all their gluten-free food with a circle G which can make things easier.

I hope your feeling better soon.

Skylark Collaborator
Skylark
Posted

It sounds like you had gluten issues and some malabsorption earlier, but you weren't celiac. Stress can trigger the full-blown autoimmunity.

What bloodwork was positive? If you had high anti-EMA or anti-DGP, there are publications saying a biopsy is unnecessary as those two are quite specific for celiac disease. TTG alone, and you should go through with the biopsy as it can come up in other inflammatory bowel diseases and autoimmune conditions.

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glutenfr3309 Rookie
glutenfr3309
Posted

I'll try to make this as short as possible! Back 4 years ago, I had a doctor who noticed I had pretty low vitamin levels in my body. He ordered a biopsy to test for celiac's disease, which came back negative. Other than that, I never had any symptoms.

However 3 months ago I started having stomach/intestinal issues. It was a very stressful time; I graduated college and started my first real job. I've had horrible cramping and other unpleasant things happening constantly over the past 3 months...constant pain being almost unbearable. Last week a doctor did a blood test for celiac disease, which came back positive. Now I'm scheduled to get a biopsy (again) to confirm. Is it possible for the condition to not become active until now? Like is it possible for the biopsy to come back positive now even though it was negative 4 years ago? FYI I'm a 22 year old male if that's relevant.

like the others have said, it is possible for it pop up later on in life.

i tested negative for blood tests and biopsy even though my doc saw the damage in my small intestines. i always seemed to have digestive issues growing up but never thought anything of it. it didn't start to truly effect my daily life until a few months ago. my doc believes had i not caught it this early i probably would have been positive years from now.

as far as if it's necessary to have another biopsy- doc's use the biopsy as the 'golden standard' for diagnosing celiac. i think it's up to you what you decide but in the end if you feel better not eating gluten regardless of tests results continue the gluten-free diet!

randomceliac Newbie
randomceliac
Posted
  • Author

It sounds like you had gluten issues and some malabsorption earlier, but you weren't celiac. Stress can trigger the full-blown autoimmunity.

What bloodwork was positive? If you had high anti-EMA or anti-DGP, there are publications saying a biopsy is unnecessary as those two are quite specific for celiac disease. TTG alone, and you should go through with the biopsy as it can come up in other inflammatory bowel diseases and autoimmune conditions.

Yes I had all 3 of those tests done, all came out positive.

Skylark Collaborator
Skylark
Posted

You might talk to your doctor about how necessary it is for you to keep eating gluten before the biopsy. You're obviously celiac and I can totally see where you would want to stop eating gluten and being in pain.

Here is a study showing 99% specificity for anti-DGP.

Open Original Shared Link

One suggesting biopsies are not necessary with anti-EMA

Open Original Shared Link

And another showing how good anti-EMA is at predicting celiac.

Open Original Shared Link

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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
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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! 
    • Scott Adams
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      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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