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Looking For A Good Book On Gluten Sensitivity, My Story Summed U P

ClevelandRocks

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ClevelandRocks Newbie
ClevelandRocks
Posted

Hi.

First off, I have Selective IgA Deficiency. Mayo Clinic, Rochester, clocked my IgA to a big, fat, ZERO. I didn't realize all of my intestinal issues since birth relate to this IgA Deficiency until the age of 23 when they finally diagnosed me.

I have suffered with chronic diarrhea my entire life. Severe GERD, and during the past 10 years severe, unrelenting nausea and bloating.

I have read up on Selective IgA Deficiency and how most, if not all, are at least gluten intolerant. I know as much based on personal experience because of how much better I feel off gluten. I also have intolerances to dairy and high carbs (white floured products) in general.

Of course the blood testing and endoscopy biopsies have not showed Celiac but my immunologist says that's not unusual for IgA Deficiency patients since most of us have gluten intolerance that cannot be diagnosed with a blood test or scope/biopsy.

Fairly recently I was diagnosed with both severe Vitamin D Deficiency (barely ANY Vitamin D) and a low Vitamin B12. At the time I was not strictly following the gluten free diet, a low carb diet but not totally gluten free.

Here are some of my questions:

1. How many of you are Selective IgA Deficient and have either Celiac or Gluten Sensitivity? I know if you have Celiac you also have Gluten Sensitivity but one can also just be Gluten Sensitive and not with Celiac. And for those of you who share this diagnosis with me... what GI problems do you have and what food intolerances do you have?

2. Can anyone recommend a good book for me to purchase with the diet outlined for gluten sensitivity?

3. Is it common to be D and B12 Deficient with just Gluten Sensitivity?

4. I also feel I have Candida issues as well... a coated tongue, cravings for sweets, etc. Does Candida issues relate to Gluten Sensitivity as well and how can you also get rid of the Candida while staying away from Gluten?

Thanks.

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cassP Contributor
cassP
Posted

what about the blood test for Endomysial Antibodies?? i THINK that will still show up even if you are Iga deficient.

i am LOW on the Iga, but not a zero.

i used to get EVERY gut symptom- much better now with gluten free. i also had to eliminate high fructose foods. i do better without dairy- but have trouble eliminating it. and i do much better with little or no grains.

also, you dont have to be dx with Celiac to be in horrible distress from gluten.

oh- and there's a new book out called: Cereal Killers .. looks really good

cassP Contributor
cassP
Posted

ps- here's a link (cause apparently there's other books with this title):

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ClevelandGuy Rookie
ClevelandGuy
Posted

Hi ClevelandRocks,

I can't answer any of your questions, but I just wanted to say Hi to a fellow Clevelander. :-) Tommy's in Coventry Village has some gluten-free menu items, in case you haven't been there yet.

ClevelandRocks Newbie
ClevelandRocks
Posted
  • Author

what about the blood test for Endomysial Antibodies?? i THINK that will still show up even if you are Iga deficient.

i am LOW on the Iga, but not a zero.

i used to get EVERY gut symptom- much better now with gluten free. i also had to eliminate high fructose foods. i do better without dairy- but have trouble eliminating it. and i do much better with little or no grains.

also, you dont have to be dx with Celiac to be in horrible distress from gluten.

oh- and there's a new book out called: Cereal Killers .. looks really good

Hi, thank you for the information and the link!

I am not exactly sure what Mayo did for Celiac testing but they tested me while keeping in mind that I am without any IgA so I assume Mayo Clinic would know what they're doing as far as testing BUT they said I tested negative. I remember my immunologist I saw several years back told me that IgA Deficient patients are split with actually testing positive for Celiac versus Non-Celiac but Gluten Sensitivity. He said the bottom line is the same though! Most of his IgA Deficient patients have reactions to gluten and he suggests strict avoidance to feel better. He also talked about white flour products in general being bad for IgA Deficient people.

I am the most shocked over my Vitamin Deficiencies. I have virtually zero Vitamin D, well I did, but supplementing has allowed a normal range level now. My B12 was like 242 (not sure of the label) and of course my one doctor said that was entirely normal :P even when the lab range showed it "indeterminate" but the endocrinologist said that number is way too low and suggested supplementation. I suppose this is all due to the gluten intolerance?

And hey ClevelandGuy!

Cleveland does rock, doesn't it? Heh. LOL. I was born on the East Side. Where abouts are you? Go Browns! Hopefully we can climb out of the hole we've been in for a couple years now!

ClevelandRocks Newbie
ClevelandRocks
Posted
  • Author

I also forgot to mention that I DO carry the Celiac Gene. Mayo found that. My gastro down there said immediately that I needed to try a gluten free diet. I asked her why she was recommending this since my blood tests were okay minus finding out that I carry the gene. She said they do not always go by testing, they go by a complete history, listening to the patient, taking the entire picture and viewing it. She also said the fact that I carry the gene, am IgA Deficient, have stomach dysmotility issues all points to some sort of gluten sensitivity. I credit her for being so informed although I guess you get that when you go to Mayo, or you better. LOL.

sb2178 Enthusiast
sb2178
Posted

No, EMA is also IgA based. They can do a TTG based on IgG though. And there is antigliadin IgG. I'm pretty sure nobody tested me for IgA deficiency, and need to get that done (the IgG tests WERE elevated, the IgA tests were borderline). Symptoms resolved gluten-free.

I have a couple of cookbooks, but none I would recommend as great.

You Won't Believe It's Gluten-Free is on my table, and looked comprehensive and interesting enough to check out from the library, but I haven't read it in detail yet. Author: Robyn Ryberg

Dr. Peter Green's 2010 book was a great level-headed introduction to the disease and issues. Beth Israel Deaconess also has out a more technical text which is interesting if you have a stronger science/health background.

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lizard00 Enthusiast
lizard00
Posted

I'm IgA deficient as well, not a 0, but pretty low. Sounds like your doctor is pretty good, it is wise to use all the information available from the patient. My GI did the same. He believes I have celiac, as do I.

I also recommend Dr. Green's book, Celiac Disease: A Hidden Epidemic. It really breaks it down to an understandable level and helps you understand why celiac does so many different things to your body.

cassP Contributor
cassP
Posted

interesting about the white flour & Iga deficient..

sounds like u had good docs at Mayo! complete history is great- especially since false negative tests are so common.

question- does anybody know if Deficiencies in D & B12 are common with other illnessess?? my sis in law was severely deficient in both D & B12. she doesnt have gut symptoms- but i thought she should test for Celiac anyways. (of course i have a habit of suspecting Gluten with almost any mystery illness lol).... PLUS- she has the horizontal cracks on her fingerprints- do any of u guys have those horizontal lines??? i need to find the article & post it- its fascinating

cassP Contributor
cassP
Posted

medical article on horizontal lines on your fingerprints- ive got them, do you??

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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