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Family Doctor Not Acting On Results

Josina

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Josina Newbie
Josina
Posted

Hello everyone!

I am very new here. I have been battling gluten and lactose intolerance now for the past 8 years. I just learned about Celiac Disease from a neighbour in the past few years. I have been asking my doctor for most of the past 8 years if I could be tested for food allergies. I was very grateful to learn that I was not going crazy. (family not very supportive). I was finally tested for Celiac Disease by blood and my results came back positive. I believe that I have been battling this disease for most of my life. My doctor still believes it is no big deal! After reading on the net and this site, I am realizing that this is very much a big deal.

Would someone please tell me what my next step should be. I have put myself on a Gluten free diet. I know in the past that has worked. I did not realize that shampoo and soaps etc. can harm me. What kind of doctor do I have to see next, and do I really have to have more testing? It seems really insane to have to keep eating foods that will continue to harm me and make me feel horrible?

I also would like to know, does this disease effect moods and depression etc. There seems to be so much info that I am unable to find on the sites that I have been to. I have learned more here than anywhere else. I read that 1 out of 133 North Americans suffer from Celiac Disease!

Thank you!

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mouse Enthusiast
mouse
Posted

Welcome to the forum and here is to your future good health.

I was only diagnosed with a blood test as I was literally almost dead by the time I was diagnosed. I was to sick for the endoscopy and my GP wanted me to go gluten free right then. He said another two weeks and I would have had no recovery. So, if I had been told to keep eating gluten and wait for the endo, I would not have done so. It just was not an option for me.

As far as depression, I had very little, but I had unbelivable mood swings. In that I could throw such a temper tantrum that would scare anybody, including myself. I used to break things, even things I loved during these tantrums. I would be telling myself to calm down and shut up, but there was no way I could. They just had to play themselves out. After I went gluten free, they went away. I can still get mad at something, but it is calm and with rational thinking.

You will notice many changes in the coming months both physical and mental. Welcome to a good new life.

AndreaB Contributor
AndreaB
Posted

The next step would be biospy if you want to do that. It's certainly not necessary in my opinion though. If you are comfortable going gluten free based on the blood test and diet response then go ahead.

If you want the "gold" standard diagnosis by biopsy then you'll need to stay on gluten until that is over with.

Murph Newbie
Murph
Posted
I read that 1 out of 133 North Americans suffer from Celiac Disease!

Ya, that's not really SUFFER suffer. I think it's that there is data that 1 in 133 have the genes to *potentially* have celiac disease activated. And even among those w/ active celiac, the magnitude of the effect on their lives varies drastically.

That being said - best of luck in finding a better Dr. They ARE out there! Being gluten-free is tough and frustrating for a while, but you'll get used to both the diet and the feeling good!!

aikiducky Apprentice
aikiducky
Posted

Murpf, it really is 1 in 133 with active celiac. As to the genes, about 40% of the population have the genes to potentially have celiac activated, but as you see, about 1%-and-a-bit actually get celiac. It's really much more common than people think!

I'm not saying that you were advocating not going gluten free...just wanted to clarify in case someone new read this: Some celiacs can be asymptomatic and so not notice a big effect on their lives immediately, but the tricky thing is that if one doesn't go gluten free, no one can predict who's going to get the really bad problems later in life, like damage from severe vitamin deficiencies, neurological symptoms, or cancer.

Pauliina

Karen B. Explorer
Karen B.
Posted
Ya, that's not really SUFFER suffer. I think it's that there is data that 1 in 133 have the genes to *potentially* have celiac disease activated. And even among those w/ active celiac, the magnitude of the effect on their lives varies drastically.

That being said - best of luck in finding a better Dr. They ARE out there! Being gluten-free is tough and frustrating for a while, but you'll get used to both the diet and the feeling good!!

https://www.celiac.com/st_prod.html?p_prodi...-19107121139.04

Celiac.com 04/10/2005 - Celiac disease is, by definition, a condition in which the intestinal wall is damaged as a result of eating gluten. It is a chronic illness in which the symptoms wax and wane1 for reasons that are not yet understood. Celiac disease is the result of genetic and environmental factors. We now know two HLA markers (DQ2 and DQ8) for the predisposition for celiac disease2. One environmental factor is, of course, the consumption of gluten, but there may be other environmental contributors. Recent research reveals that about 1% of the population suffers from this condition although most remain undiagnosed.

No, that's 1 in 133 that actually have it. When you consider the number of ads for reflux drugs, IBS drugs, diarrhea drugs and osteoporsis drugs, you'll see where some of those people might be hiding. Since there is no drug for Celiac, it's not nearly as well known but I suspect we provide a great market for all of these products before we finally find our way to a diagnosis. I know I took Prevacid for 5 years before finding out I have Celiac. Haven't needed it since going gluten-free.

Karen B. Explorer
Karen B.
Posted
Hello everyone!

I am very new here. I have been battling gluten and lactose intolerance now for the past 8 years. I just learned about Celiac Disease from a neighbour in the past few years. I have been asking my doctor for most of the past 8 years if I could be tested for food allergies. I was very grateful to learn that I was not going crazy. (family not very supportive). I was finally tested for Celiac Disease by blood and my results came back positive. I believe that I have been battling this disease for most of my life. My doctor still believes it is no big deal! After reading on the net and this site, I am realizing that this is very much a big deal.

Would someone please tell me what my next step should be. I have put myself on a Gluten free diet. I know in the past that has worked. I did not realize that shampoo and soaps etc. can harm me. What kind of doctor do I have to see next, and do I really have to have more testing? It seems really insane to have to keep eating foods that will continue to harm me and make me feel horrible?

I also would like to know, does this disease effect moods and depression etc. There seems to be so much info that I am unable to find on the sites that I have been to. I have learned more here than anywhere else. I read that 1 out of 133 North Americans suffer from Celiac Disease!

Thank you!

The next step I'd take, if I were you, is finding a local supprt group because they could recommend a doctor that is knowledgeable about Celiac issues and will listen to you. They'll also be a great source of information about what to expect, where the best sources are locally for gluten-free food and supprt for where you are now.

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

Also, the Celiac.com website is definitely my first "go to" place for Celiac info online. But you may find Clan Thompson handy (Open Original Shared Link) and there are others out there that are very informative, helpful and some are downright entertaining.

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little-c Contributor
little-c
Posted

I'm newly diagnosed also. I did have a positive biopsy, so no question with me. My next step was to see a dietician to get tips on how to follow a gluten free diet. You need to be sure that it's a dietician that knows about celiac.

I also recommend that you read "Celiac Disease: A Hidden Epidemic" by Peter H.R. Green and Rory Jones. Dr. Green is the foremost expert on celiac disease. I just finished reading it. There's an explanation of the disease, the diagnosis process, how to cope, how to read labels, etc, pretty much any angle you can think of. I checked it out from the library.

And, the internet has tons of information. This site in particular has great info and this forum has helped me cope.

You'll need to do an inventory of your kitchen foods and cookware. Out with the old, in with the gluten free. And, you'll need to find sources for gluten free food. This site is a good one, also Whole Foods has bakery if there's one near you. I've also found that there are quite a few mail order bakeries for gluten free stuff if you just search. Hopefully you live in a celiac friendly area. If you don't the internet will be a godsend.

Good luck in adjusting to your new lifestyle. It takes time and patience. The good news is you'll feel much better.

Josina Newbie
Josina
Posted
  • Author

Thanks everyone!!!

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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? 
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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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