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New Here , Some Questions?

shellv1969

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shellv1969 Newbie
shellv1969
Posted

Where to start, I am 36 years old and have been sick the last 10 years. I have been told I have everything from Flybromyalgia to IBS. The depression and anxiety have been horrible and i have been getting to the point i cannot drive at night because i am completly night blind. The day after Thanksgiving i had to go to the emergancy room. I was in horrible pain in my abdomen and could hardly breath. The cat scan showed nothing and the blood work showed i was anemic. I have gained about 40 lbs in the last 2 months, (mainly in my abdomen from swelling) Well the scheduled me to see a gastro specialist this past tuesday that i have seen before for the ibc and problems after my gallbladder was removed and he mentioned the symptoms of Sprue/Celiac disease and it fits my symptoms perfect. He wanted me to try a gluten free diet and is setting up me to see a dietician.. He is doing a blood test on Monday and i have been eating gluten free for the last 2 days and am starting to feel better... Will this effect the blood panel for sprue? I feel like after reading this message board that i am finally going to feel normal again and that is what has been going on with me instead of the other diagnosis. I have the extremely dry skin, ezcema, sores in the corner of my mouth , pain all over my body and bones...( i think i have every symptom. ) I felt really overwhelmed at first but this message board has seemed to make me feel better and know i am not alone in how i have felt. I know now this is what killed my mother, She died from emancipation at age 54. She weighed 69 lbs when she died. She always had gastro , pancreas, liver , stomach and intestinal problems and as the years went by she became insullin dependant diabetic and even though she ate we watched her waste away to nothing. I wonder if she was ever diagnosed with this.. Anyone know where to look up support groups in the area that you live in? I still feel a little overwhelmed and any advise would be great

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Rachel--24 Collaborator
Rachel--24
Posted

In order for the bloodtests to be accurate you cannot start a gluten-free diet. Your Dr. was wrong to tell you to go on the diet and then he'll test you. You can get a false negative by starting the diet before testing. Its the same for the the Endoscopy....you need to be eating plenty of gluten for up to 3 months before the test.

happygirl Collaborator
happygirl
Posted

Welcome to the board! We are happy you have found us.

It sounds like you have been through a lot, health wise. I would recommend that you keep eating gluten until after you bloodwork in order to have accurate bloodwork. You will need to discuss if you want an endoscopy/biopsy with your dr., as you don't want to have to go gluten free, then go back on gluten.

Open Original Shared Link has the list of the bloodwork you need run. Many doctors do not run the full panel. Print out the list and bring it with you and make SURE that the full panel is run.

GIG is one of the best groups around. Here is a link to some of their branches: Open Original Shared Link

Also, CSACeliacs has numerous groups, and Celiac Disease Foundation has some celiac support groups!

I am sorry to hear about your mother. If you do have Celiac, it might very well be what she had. It is a genetic disorder, so it can run in families (but, just having the genes doesn't mean you have it, nor does having a family member mean you will get it, luckily!)

I hope his helps some. Let us know what else we can do. PM me if there is anything I can help with.

Laura

Mary Contrary Rookie
Mary Contrary
Posted
In order for the bloodtests to be accurate you cannot start a gluten-free diet. Your Dr. was wrong to tell you to go on the diet and then he'll test you. You can get a false negative by starting the diet before testing. Its the same for the the Endoscopy....you need to be eating plenty of gluten for up to 3 months before the test.

my Doctor was of no help in my quest to feel better, so two months ago I went gluten free and am now just starting to feel better...but I did have the blood work done about 3 weeks ago or so and of course it was negative...now I am having an Endoscopy this week, but I'll have it done anyway, along with a colonoscopy. My new Gastro Doc was sure enough of my symptoms to think I could have a wheat problem..since my major bloating and gas have gone away, still have D pretty bad, but it is finally starting to subside a bit,......I am not very hopeful now that he will find anything...but it doesn't matter, I'll continue with the no gluten anyway, I am so sure that this is my problem, but it will be good to rule out any other major bowel problems.

I wish you luck shellv and it's so sad about your mother. My maternal grandma had horrible, what they thought was IBS, as long as I can remember, and I am now sure it was probably celiacs, my mother and two aunts also have problems.

shellv1969 Newbie
shellv1969
Posted
  • Author

Thanks for everyones advise, I have been feeling a lot better not eating gluten in less than a week. but before the blood test i decided to go and eat up...ha ha . I had Ravioli with cheese in it yesterday w/garlic bread and about died. The swelling that had went down came right back and i was up all night with stomach cramps and running to the bathroom. yuck. I am going to be tested this week but god i do not want to suffer like this. After doing some more family research all my mother's sisters and my granfather died from complications w/the intestinal track... Pancretitis, diabetes, etc... I have several 1st cousins that are now suffering with diabetes, fybromyalgia, exzema, psoriosis,stomach cancer, gerd ,etc. After my test , If it comes out positive I am going to be informing everyone in my family to be tested. Would eating a little gluten be ok for the test to come out positive? (even though i prefer not to eat any at all)

Mary Contrary Rookie
Mary Contrary
Posted
Thanks for everyones advise, I have been feeling a lot better not eating gluten in less than a week. but before the blood test i decided to go and eat up...ha ha . I had Ravioli with cheese in it yesterday w/garlic bread and about died. The swelling that had went down came right back and i was up all night with stomach cramps and running to the bathroom. yuck. I am going to be tested this week but god i do not want to suffer like this. After doing some more family research all my mother's sisters and my granfather died from complications w/the intestinal track... Pancretitis, diabetes, etc... I have several 1st cousins that are now suffering with diabetes, fybromyalgia, exzema, psoriosis,stomach cancer, gerd ,etc. After my test , If it comes out positive I am going to be informing everyone in my family to be tested. Would eating a little gluten be ok for the test to come out positive? (even though i prefer not to eat any at all)
I am so new at this, but I don't care what the test results say now, if they are negative, I'll know why they are negative and will just forge ahead gluten free for the rest of my life. I am not going to torture myself to find out something I already know to be true...but like I said I will be glad to have a few other things checked out tomorrow anyway, just to be on the safe side, in matters of our health I feel it is better to error on the side of caution.
happygirl Collaborator
happygirl
Posted
Thanks for everyones advise, I have been feeling a lot better not eating gluten in less than a week. but before the blood test i decided to go and eat up...ha ha . I had Ravioli with cheese in it yesterday w/garlic bread and about died. The swelling that had went down came right back and i was up all night with stomach cramps and running to the bathroom. yuck. I am going to be tested this week but god i do not want to suffer like this. After doing some more family research all my mother's sisters and my granfather died from complications w/the intestinal track... Pancretitis, diabetes, etc... I have several 1st cousins that are now suffering with diabetes, fybromyalgia, exzema, psoriosis,stomach cancer, gerd ,etc. After my test , If it comes out positive I am going to be informing everyone in my family to be tested. Would eating a little gluten be ok for the test to come out positive? (even though i prefer not to eat any at all)

You need to be eating a good amount of gluten for the tests to be positive.

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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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    • 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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