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Hello From So.cal.

angieInCA

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angieInCA Apprentice
angieInCA
Posted

Hello all!

I am a total newbie to this whole celiac thing. I was diagnosed on Aug. 22nd. Just a little over a week of finally knowing what has been my problem for over 40 years. Sad thing is I became suspicious over 3 years ago and my gastroentologist then said "No Way" but never ran one test.

I've known for years something was not right and have had test after test for allergies and other things but nothing was ever conclusive. Sad thing is if you go down the Celiac check list I had 14 out of what 17 symptoms! And not one Dr. in my entire life ever questioned it. My guess is because the one symptom I didn't have was weight loss. Matter of fact I have always been about 10 to 15 lbs over weight and now I am close to 40 lbs over weight. Strangely enough, after just 1 week of being gluten free I have dropped 10 lbs and feel the best I have felt in years!

I have found all of this very daunting as I'm sure most of you did in the beginning. I've spent countless hours researching. I'm so excited to join a community where I feel I can learn so much.

Just call me

Angie

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home-based-mom Contributor
home-based-mom
Posted
Hello all!

I am a total newbie to this whole celiac thing. I was diagnosed on Aug. 22nd. Just a little over a week of finally knowing what has been my problem for over 40 years. Sad thing is I became suspicious over 3 years ago and my gastroentologist then said "No Way" but never ran one test.

I've known for years something was not right and have had test after test for allergies and other things but nothing was ever conclusive. Sad thing is if you go down the Celiac check list I had 14 out of what 17 symptoms! And not one Dr. in my entire life ever questioned it. My guess is because the one symptom I didn't have was weight loss. Matter of fact I have always been about 10 to 15 lbs over weight and now I am close to 40 lbs over weight. Strangely enough, after just 1 week of being gluten free I have dropped 10 lbs and feel the best I have felt in years!

I have found all of this very daunting as I'm sure most of you did in the beginning. I've spent countless hours researching. I'm so excited to join a community where I feel I can learn so much.

Just call me

Angie

Welcome, Angie! :)

Unfortunately your story is far too common. You have come to a great place top learn. Read and ask questions to your heart's content! :P

quillpenz Newbie
quillpenz
Posted

Dear Angie from California, I suffered this disease as a child, I now realize. There were lots of times as a child when I think I was wheat free because on the farm in NC we alternated between biscuits (wheat) and cornbread and my mom made the pure cornbread without the flour. All I know is that I had the horrific celiac episodes once a month at a minimum as a child and had no idea what was wrong. My symptoms are violent. I think that by the time I was college age, it went into remission and came back in the 1990's when I had a serious family tragedy. In the 1990's I heard about celiac disease on the public radio broadcast, an item from the BBC and something about how the disease was generally in people of Mediteranean dissent. In the late 80's and early nineties they said that if you went wheat free for a year or so, you would be cured and could resume the wheat. That turned out to be false. I began to suspect that celiac was what I had. When I mentioned to my doctor, he said, "Not likely": I am black. He said that black people rarely get the disease. A girlfriend, a white woman, was having trouble and got tested. Turned out she did not have it but she told me that I should look into it. Like you, Angie, I could not get him to test me, so, I experimented, in 1999 and went off wheat. One week later I felt like a million dollars. I have stayed wheat free for nine years except for accidents and mislabelling and the episodes are horrible. I finally got tested this year and it confirmed my own diagnosis. I had a recurrence of symptoms because of a particular item of canned vegetables that I would never suspect had the wheat. I know how you feel. Angie. Are you near a Trader Joe's? They have a great ginger snap cookie. Harris Teeter and Food Lion are labelling shelf areas with large letters, "gluten free" and they jump at me like neon. As a child and young adult, I had trouble gaining weight. I weighed 99 pounds until I was 27 years old. As a child, I was made fun of for being so skinny. When I turned 60 I weighed 112. Luckily I had a big ego and didn't mind. I minded but I didn't let it stop me from being aggressive and happy. Angie, I hate to welcome you to this ailment, but welcome andgood luck. Quillpenz

angieInCA Apprentice
angieInCA
Posted
  • Author

I had only really learned about Celiac about 4 years ago before my Step-Daughter was diagnosed with Crohn's. I was doing research trying to help her when I discovered Celiac. All the sudden all the puzzle pieces started fitting together for me. It was so obvious.

I immediately went to my Dr. and said I think this might be my problem. Was sent to a gastroentologist and of course the answer was no and we don't need to test. For the last 3 years I have seen 6 different Dr.s in this area untill I saw one that would actually listen to me. I'm sure my insurance company thinks I'm a complete hypochondriac.

Thank God I have a Trader Joe's just down the street and we have a great Health Food store very close that had a whole aisle just for Gluten free even though they are a bit on the expensive side. I found some of the same things at Trader Joe's for almost 2 dollars cheaper.

There is a Whole Food's in this area but it's about 20 miles away so trips will have to be planned because here in So. Cal. 20 miles may mean an hour of traffic just to get there.

Phyllis28 Apprentice
Phyllis28
Posted

Henry's Famers Markets also have a reasonable selection of gluten free foods in Southern CA. Below is the link to their "Find a Store" webpage

Open Original Shared Link

quillpenz Newbie
quillpenz
Posted

Wholefoods has oatmeal cookies and chocolate chip!!!!

I cannot find a sandwich bread that I like. It is as heavy as lead. Quillpenz

Janessa Rookie
Janessa
Posted

I am in So Cal too. A lot of stuff you get at whole foods you can also buy in bulk on amazon much cheaper, so once you find something you like you can just order.

We are also getting pizza places that have gluten free pizza (pizzafusion-dot-com)

And Babycakes is opening in LA too (babycakesnyc-dot-com)

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

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    • knitty kitty
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      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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      By knitty kitty · Posted

      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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