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How Long Must I Wait!

Jocelyn357

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Jocelyn357 Rookie
Jocelyn357
Posted

Ok, so I have been lurking around these parts for a while now trying to convince myself to get tested for Celiac. I'm so thankful for the great info I have found here so far. I decided to order the Enterolab tests, and I'm THE MOST impatient person alive. I know they say it can take up to three weeks for results. Well, it's only been 8 days and I'm already checking their site for my results like twice daily. What a nut I am!!! Can you tell me how long you had to wait for your results? My symptoms include (but of course are not limited to) Acute Panic disorder, Depression, life-long constipation with occasional diarrhea, chronic fatigue, non-specific seizure episodes, vision problems, vertigo, low imune system, nausea, etc, etc, etc. But my real problem is I RARELY go to the doctor, because I have had a couple bad experiences with doctors reading my chart, seeing I have panic disorder, and treating me like it's all "in my head". So I haven't been to the doctor in almost 4 years. Bad, I know. I shouldn't have to live like this at 26 should I? I am so anxious for my results. Thanks for any help, comments. BTW, I have this new thing happening where I wake up in the middle of the night, sweating and am freezing! Are body temp problems typical of Celiac/Intolerance?

Jocelyn

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CMCM Rising Star
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Posted
Ok, so I have been lurking around these parts for a while now trying to convince myself to get tested for Celiac. I'm so thankful for the great info I have found here so far. I decided to order the Enterolab tests, and I'm THE MOST impatient person alive. I know they say it can take up to three weeks for results. Well, it's only been 8 days and I'm already checking their site for my results like twice daily. What a nut I am!!! Can you tell me how long you had to wait for your results? My symptoms include (but of course are not limited to) Acute Panic disorder, Depression, life-long constipation with occasional diarrhea, chronic fatigue, non-specific seizure episodes, vision problems, vertigo, low imune system, nausea, etc, etc, etc. But my real problem is I RARELY go to the doctor, because I have had a couple bad experiences with doctors reading my chart, seeing I have panic disorder, and treating me like it's all "in my head". So I haven't been to the doctor in almost 4 years. Bad, I know. I shouldn't have to live like this at 26 should I? I am so anxious for my results. Thanks for any help, comments. BTW, I have this new thing happening where I wake up in the middle of the night, sweating and am freezing! Are body temp problems typical of Celiac/Intolerance?

Jocelyn

My tests took exactly 2 weeks. If you are doing the gene test as part of the larger celiac panel, I believe that one is sent out to another place, so they probably wait until it comes back to compile all the results.

There are so many symptoms and other possible disorders connected to celiac, it's always hard to know what is going on. Getting the tests is a good start, and you proceed from there. If you have anibodies etc. and have the associated gene, then you can point yourself more in that direction....and try the diet and see if you symptoms subside over reasonable time on a strict diet. If you don't have the genes and you don't test positive on the stool tests, then you obviously should try to find out what else could be going on to account for your symptoms. HOWEVER.....most if not all of your symptoms mentioned above could be explained by celiac disease or at least by gluten sensitivity. I don't know about the seizure episodes, though....maybe that should be checked out--maybe someone else here has experienced that at some point in time before their diagnosis. You should not be afraid of doctors, but you should evaluate whoever you go to and see if you like their manner, feel confidence in their manner and knowledge, and if you don't like a doctor you find someone else. There are good doctors and bad doctors like in every other profession. Remember, they are working for YOU, it's your money that pays them! <_<

Rachel--24 Collaborator
Rachel--24
Posted

I got my results in a little less than 2 weeks. They will email you the results. Seems like they email them on Sundays alot of the time. I got mine on a Sunday.

I had the nightsweats/chills quite frequently but along with gluten intolerance I had a bacteria infection so not sure which caused it. Could have been a combination of both but I've only recently been diagnosed with the bacteria infection and since going gluten free 10 months ago my night sweats are few and far between and not nearly as severe.

I got my results in a little less than 2 weeks. They will email you the results. Seems like they email them on Sundays alot of the time. I got mine on a Sunday.

I had the nightsweats/chills quite frequently but along with gluten intolerance I had a bacteria infection so not sure which caused it. Could have been a combination of both but I've only recently been diagnosed with the bacteria infection and since going gluten free 10 months ago my night sweats are few and far between and not nearly as severe.

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Jocelyn357 -- I'm not sure if this thread is okay to post this but I don't think others will mind.

I noticed you said you get seizure episodes. ME TOO! WHAT ARE YOURS LIKE??? I also suffer from them along with post traumatic stress (PTS), celiac disease and other life threatening food issues. People don't understand what we go through... I look great -- except those people don't see me when I'm laying on the bathroom floor having what I call an 'episode'. I have just discovered epilepsy in my family the hard way. I have, oops, had an Auntie that was on a feeding tube being pumped with gluten and she was getting them too. I was powerless to stop the doctors and nursing home. She is no loger with me she passed holding my hand at hospice in Oct.

Open Original Shared Link along with some links I found about celiac and seizures (on the right side bottom of the blogg)

But, my seizure started if I eat corn, gluten, dairy or other things that trigger it for me. The first 3 time in the last 10 years they came from pop corn. So I stopped pop corn. It seems that after the food gets into my colon it spasms so bad and the pain is so intense, I loose control of my body and pass out. I've hit my head cut up my head from hitting it on the bathtub or floor. I wake up with my little dog licking my face. I can't control my bowels (imagine that) I shake, get really pale white, feel like I'm going to die, and can't cry out for help. It adds to my PTS. It is frightening to say the least. My 85 year old daddyO lives with me in the winter months and he has witnessed them. :wub: One time he picked me up off the bathroom floor and put me into bed, and gave me electrolytes it does wonders for me.

I get the night sweats, not cold anymore (that was from my thyroid) before I had it radiated. That's another story. After reading several of Rachel--24 posting she helped me see something I never noticed I was doing. If I eat any sugar about 3 or 4 hours or so before bed I get them too.

I've lived gluten & dairy free 5 years. I have not been tested for celiac disease the doctor said I had a spastic colon and wouldn't do a biopsy :angry: when he did the colonoscopy. And another doc told me "You know you have celiac disease and I know you have there in little you can do save your money." :(

On Monday my daddyO is going for the celiac disease profile test. He said to shut me up and prove he doesn't have it. But he has only one symptom he's anemic oh and he's diabetic, borderline hyper thyroid. I have read posts that say unless you eat gluten before you are tested and right before you are tested you will come back with a false negative. So over the weekend I'm going to feed him gluten everything and hope I don't get cross contaminated.

Oh that reminds me -- check the ingredients in your medication, it might contain gluten and dairy. It might be adding to things. Go to a compound RX that is free of those binders they use.

The other things I've learned here (the group here is wonderful people) that if you have a seizure and want to be tested for epilepsy you have to be tested with in 24 or no more then 48 hours max in order to get a true test results otherwise it a false negative. I haven't gone for testing... I don't want to loose my drivers license. I'm alone, no hubby, or kids to help me.

Stick to your gluten free diet. Some of us have more then celiac disease here. Soy is a problem, green tea, dairy, peanut butter, night shade veggies for some. Listen to you body and stay connected to these wonderful people we all care about each other here. Sorry my post is so long --

Stay well!

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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

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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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