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It's All Starting To Fit Now!

ncteacher

By ncteacher
in Doctors

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ncteacher Newbie
ncteacher
Posted

I've been very low on energy pretty chronically for the past 6 years now. Interestingly, low energy periods always coincided with abdominal pain (very similar to what MS sufferers call the "bear hug"). Other symptoms progressively got worse: shortness of breath, joint pain, chest pain, nerve pain, back pain (sciatica), anxiety, and others. Two trips to the MRI cleared me of any major problems.

Blood tests in 2010 FINALLY picked up what had become SEVERE anemia and Vitamin D deficiency (my doctor wondered how I was still walking around). Doc told me that anemia that bad can only come from a bleed. I had upper and lower endoscopy to look for those bleeds, but only one benign polyp was found and removed.

After that, the advice was to take iron and D supplements and call if symptoms got worse. I had already suspected I was lactose intolerant, so I cut dairy out and looked for improvement, and there was some--although I still felt horrible by the end of every, single day. It wasn't until I ate a particularly bread-heavy breakfast one morning that I suspected gluten may be the issue.

Anyway, my whole point here is that I went through my medical records the other day and realized that there was never a blood test done to measure anti-gliadin antibodies. Anyone else have a similar misadventure? I'm just wondering if those tests may have made things a little less miserable and drawn out. Plus, I don't even think the upper endoscopy went as far as my duodenum...they were looking for stomach ulcers. :unsure:

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mushroom Proficient
mushroom
Posted

Welcome to the board, and welcome to the long-time-sufferers club. Your tale is unfortunately too similar to those of too many here.

When a patient walks through the doctor's door with symptoms of what we now know to be celiac disease, that is so seldom the first, second or even third, fourth or fifth thing that pops into his/her head. The most common one seems to IBS :P They will think of stomach ulcers, they will think of cancer, Crohn's, ulcerative colitis; they will think of mental illness/disorder, hypochondria, any of hundreds of other diagnoses, but only one in a thousand will think, "Aha, this could be celiac disease." :( So they do every blood test in the book except celiac, and they perform upper and lower endoscopies without taking the celiac biopsies, and tell us to take medications to treat our symptoms :o

Congratulations on figuring it out for yourself :)

Tusofsky Newbie
Tusofsky
Posted

I'm shocked, after all I've seen in these forums, that during my endoscopy (looking for ulcers) my doctor decided to take biopsies to test for celiac. He never ONCE mentioned this to me before hand. He mentioned it in passing after my endoscopy was done (I didn't even know what he said, I saw him for like 20 seconds and wooooosh he was gone again) but on my report, there it was. "Biopsies taken with cold forceps to test for celiac."

Now if only he'd talk to me about it :P He's not very patient friendly, as I said, I barely have seen him. I haven't gotten my results back, but seeing that then learning about it, everything seems to just CLICK. But the thing is, I would have NEVER thought to check for celiac, so I'm glad I found a doctor who actually did.

I saw in another thread, if you can get tested for it, then probably should? The point was "if you KNOW you're less likely to cheat" which I think is true. I know it would be for me anyway haha BUT still, if you're feeling better (either way) then that's awesome! It's what everyone wants.

Skylark Collaborator
Skylark
Posted

I think diagnosis misadventures are more common than not. I spent many years on psych meds and nobody thought to connect the fatigue, bipolar illness, chronic diarrhea, stomach-aches, thyroid problems and .... CELIAC.

Like you, I'm not going to eat wheat and get tested. I don't really care about the labs or results because there is no question in my mind that I need a 100% gluten-free diet. (And very little question in my mind that I am celiac rather than gluten intolerant.)

Broberts Newbie
Broberts
Posted

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

mushroom Proficient
mushroom
Posted

I am sorry to hear how bad you have been feeling. I have not been as sick as you, but I have had low energy for awhile now and it wasn't until about a month ago when I woke up with severe joint pain that I thought I should see a doctor. He tested for many things and one came back positive for celiac. For the week prior to the doctor visit, I cut out gluten. I felt better almost immediately. It has been about three weeks now and I now realize I have at least an intolerance to gluten. Today the doctor agreed and things from my past have started to make sense. Anyway I am not having anymore testing done as I know that I can't tolerate gluten. I proved it again tonight with dinner. The treatment is about the same so I don't need a specialist at this time. Good luck to you and try going gluten free, you will notice a difference quickly. I now realize it isn't normal to feel like you ate a thanksgiving meal every time you eat a meal. Good luck.

If you tested positive for celiac, you are celiac, and no, you don't need a specialist to tell you that. :) Welcome to the board.

GottaSki Mentor
GottaSki
Posted

Welcome - took over 20 years of seeing docs for the same symptoms that eventually became so bad I was in bed except for a few hours a day - the year I was dx'd I had over 50 blood tests and scans looking for every obscure disease until my internest called all five other docs in the clinic that day into the room so they could all question me at one time - one of them had I been tested for celiac - my doc said yes and I said NO - I has never heard of nor researched celiac or gluten. Well I was possitive and for a very long time I was upset/extremely angry with all the docs that had dismissed all my symptoms over the years on anemia, strss, overwork, hormones, depression -- anything rather than really listening to my symptoms.

Unfortunately my story is common - it seems there is improvement with celiac awareness...but it will take years before many docs add it to the front of their thinking - rather than one of the last things.

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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! 
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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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