Long-winded Newbie Has Some Questions

[Looking for answers]

Hi! A few years ago I came across a book that forever changes my life: “The Diet Cure,” by Julia Ross (I think this should be required reading for everyone!!!). At that time, I was irritable, bloated, had constant D, and suffered by bouts of severe anxiety. Julia Ross recommends that no one should be eating wheat, because it’s just too hard to digest. After reading that, I stopped eating wheat and I reclaimed my life.

Forward to today. I still have a sluggish digestive track, although I feel a lot better. I don’t suffer from D anymore (haven’t had one bout since stopping wheat), but I only go three times a week on average, which is not healthy. For the past few years, I occasionally suffer from what I call the “kicked in the gut feeling”—a pain in my upper abdomen of which I cannot pinpoint the cause.

Anyways, the last few weeks, I’ve had some different pain in my stomach so I went to my doctor, who then referred me to a GI. The GI said he wanted to screen for celiac disease, so I have an appointment for an endoscopy next Friday. I had some sort of blood test done two years ago, but it was negative (I also wasn’t eating wheat at the time.) After doing research through this site—thank goodness for all of you—I’ve notice some similarities and many differences in my wheat/gluten experience. First, since childhood I suffered from severe bloating and bouts of D. I always had dry skin (which has cleared up), irritability/mood swings, etc. I also had appendicitis and mono when I was younger. When I was in my late teens, I was a vegetarian (big mistake!!!), as I ate mainly wheat-based products. I was chronically tired, my D was the worst. .. I had heart palpitations, and swore I had something major like cancer. I was so cold all the time that I used to wear long underwear at night in the summer! In addition, I had dizzy spells, experienced hair loss, and was so exhausted that I couldn’t even climb three flights of stairs to my apartment in college! I also found that I wasn’t digesting food properly (if you get my drift). Gross!

Ok, I’m so sorry for being long winded and appreciate you hanging in there with me! I’m not sure if my worst symptoms were from lack of protein in my vegetarian diet or if it was from gluten intolerance. Since I quit eating wheat, I have eaten oatmeal, spelt, rye and barley—all cause bloating and make me feel uncomfortable. This is what leads me to believe that I may have celiac disease. However, my problem is that no one is my family has it that I know of. And I don’t have any major diseases, and I appear to be healthy, although I know I’ve been getting gluten here and there.

Ok, so here are my questions:

1. Is it possible to have it if no one in your family has symptoms?

2. Also, although I’ve been wheat free, I have been eating gluten here and there. If I really have celiac disease, wouldn’t I be experiencing the severe issues I had with wheat?

The reason I ask is this: I informed my doctor that I haven’t eaten a lot of gluten since going off of wheat two years ago and he insists on the endoscopy. I don’t think he’s going to find much, so I’m trying to decide my next steps, but would like your advice as to what to do base on my experience above. By the way, I tried eating wheat to prepare for the endoscopy—which I since learned from this site that it’s not a good idea, so I’ve stopped—and I quickly became emotional and felt really gross (best way to describe it!).

Thanks so much, everyone!!!

[CarlaB]

There is a thread called Questions about Enterolab started by IMResident. You can read my story there. It's almost identical to yours -- off wheat for three years, then "Do I have celiac?" I also was a vegetarian (mostly, not 100%) for several years. You can get the details from that thread.

I also found a great book called Tired of Being Tired. The book addresses health decline due to improper diet, stress, etc. She addresses how test after test turns out negative even though you're definately sick. Look at it at a book store and see if it fits you at all.

I was the first in my family to ever consider that my digestive issues may come from gluten. My grandfather clearly had a problem with it, my grandmother on the other side, and my mom. So, yes, there may not be anyone else in your family diagnosed.

I never connected symptoms to foods other than wheat, but I still felt bad, much like you're describing.

[Looking for answers]

There is a thread called Questions about Enterolab started by IMResident. You can read my story there. It's almost identical to yours -- off wheat for three years, then "Do I have celiac?" I also was a vegetarian (mostly, not 100%) for several years. You can get the details from that thread.

I also found a great book called Tired of Being Tired. The book addresses health decline due to improper diet, stress, etc. She addresses how test after test turns out negative even though you're definately sick. Look at it at a book store and see if it fits you at all.

I was the first in my family to ever consider that my digestive issues may come from gluten. My grandfather clearly had a problem with it, my grandmother on the other side, and my mom. So, yes, there may not be anyone else in your family diagnosed.

I never connected symptoms to foods other than wheat, but I still felt bad, much like you're describing.

Thank you so much! I will definitely check out the book you mentioned, and I appreciate your guidance!

[CarlaB]

Thank you so much! I will definitely check out the book you mentioned, and I appreciate your guidance!

You're welcome. I hope you come to the bottom of your health problems soon.

[rutland]

Yes, its absolutely possible that you can have celiac without any known family members having it. Esp. since many doctors dont ever think to test for it, so you never know. If you know that wheat makes you sick its very likely that its the gluten in wheat that made you sick. Since your still eating spelt, rye and other glutenous grains your may be doing further damage to your intestines. The symptoms may not be as severe as when you ate wheat, but they are still symptoms that are disturbing your life, so I would go ahead and let your doctor do the endoscopy. But just be aware that your time spent being wheat free could interfere with a proper diagnoses by endoscopy, however if you feel sick then you might want to consider going completely gluten free, and see if you dont see some resolution to your problems. You need to give it some time though, it could take several mos. to notice improvement. For me it took 2 mos. to see a drastic change. I myself never been diagnosed by a doctor. But after many years of suffering with fatigue and digestive problems I went gluten free to see if my condition would improve, and I completely reversed my illness. So I know now that I must never touch gluten again. By the way, if you do decide to go gluten-free, you may feel worse before you feel better. This happened to me. I believe it was a detox effect.

Oh and I read Julia Ross too! It is very enlightening. Did you ever try the amino acid therapy she recommends? Did it work?

Good luck!

[CarlaB]

Stef, the book I'm reading is by Jesse Lynn Hanley, M.D. Someone pointed out to me that there are many different books with this same title. So, I think we're talking about different books!

[GFBetsy]

In answer to your question number 1:

My husband just brought home an article from one of his lab magazines that was about celiac. It said that most people (90% or more) who have celiac have the DQ2 or DQ8 genes, but there are some people who have a recombinant form of the gene that comes from having both a DR7 and DR5 gene (I'm pretty sure those were the numbers . . . I'll double check if you want me to). Evidently the combination of both of those genes creates a situation where celiac can kick in. (Aren't bodies interesting?)

So, yes, you could have the disease even if no one in your family has it. HOWEVER, it is much more likely that there are members of your family who have symptoms of celiac disease and simply haven't talked about it. Before this diagnosis, how likely were you to go around talking about your bowel movements at a family dinner? It just doesn't make the conversation flow well! Besides that, not all people with celiac present with diarhea or even anxiety/depression.

Question 2: Probably the reason that spelt/rye/ etc. have caused you problems is because of gluten. Other (perhaps smaller) types/amounts of gluten may not be causing you the same obvious reactions, but that doesn't mean that they aren't causing you any problems at all.

[queenofhearts]

It certainly sounds to me as if a gluten-free diet might be just what you need. I think that before diagnosis many of us were "searchers" who tried various different diets & supplements, always feeling that we weren't properly nourished but not knowing why. I was a vegetarian for many years too, & meanwhile ate more wheat than I care to think of now! What you & many others have discovered is that it is not enough to give up obvious forms of wheat. I did try that at one point, before I really understood what gluten was, but at the time I didn't even know about soy sauce, so I was still getting plenty of wheat, let alone gluten. And if you truly want to give the gluten-free diet a fair try, you have to look at cross contamination, cosmetics, & so on, to really eliminate any chance of gluten. Also many of us really must keep it up for several months to see results.

Nini's newbie kit is on her website & has lots of sneaky things to look out for:

Open Original Shared Link

Good luck! I have a feeling you've come to the right place.

Leah

[mumseyh]

It certainly sounds to me as if a gluten-free diet might be just what you need. I think that before diagnosis many of us were "searchers" who tried various different diets & supplements, always feeling that we weren't properly nourished but not knowing why. I was a vegetarian for many years too, & meanwhile ate more wheat than I care to think of now! What you & many others have discovered is that it is not enough to give up obvious forms of wheat. I did try that at one point, before I really understood what gluten was, but at the time I didn't even know about soy sauce, so I was still getting plenty of wheat, let alone gluten. And if you truly want to give the gluten-free diet a fair try, you have to look at cross contamination, cosmetics, & so on, to really eliminate any chance of gluten. Also many of us really must keep it up for several months to see results.

Nini's newbie kit is on her website & has lots of sneaky things to look out for:

Open Original Shared Link

Good luck! I have a feeling you've come to the right place.

Leah

Wow! Thanks for the website. It has great info. I am going gluten free within a week, and trying to learn all I can.

[Looking for answers]

Yes, its absolutely possible that you can have celiac without any known family members having it. Esp. since many doctors dont ever think to test for it, so you never know. If you know that wheat makes you sick its very likely that its the gluten in wheat that made you sick. Since your still eating spelt, rye and other glutenous grains your may be doing further damage to your intestines. The symptoms may not be as severe as when you ate wheat, but they are still symptoms that are disturbing your life, so I would go ahead and let your doctor do the endoscopy. But just be aware that your time spent being wheat free could interfere with a proper diagnoses by endoscopy, however if you feel sick then you might want to consider going completely gluten free, and see if you dont see some resolution to your problems. You need to give it some time though, it could take several mos. to notice improvement. For me it took 2 mos. to see a drastic change. I myself never been diagnosed by a doctor. But after many years of suffering with fatigue and digestive problems I went gluten free to see if my condition would improve, and I completely reversed my illness. So I know now that I must never touch gluten again. By the way, if you do decide to go gluten-free, you may feel worse before you feel better. This happened to me. I believe it was a detox effect.

Oh and I read Julia Ross too! It is very enlightening. Did you ever try the amino acid therapy she recommends? Did it work?

Good luck!

Thank you--I'm so grateful for your insight. And yes, I did try her amino acid therapy when I eliminated sugar from my diet. It helped so much with the cravings . . . a true life saver! Thanks again!!

In answer to your question number 1:

My husband just brought home an article from one of his lab magazines that was about celiac. It said that most people (90% or more) who have celiac have the DQ2 or DQ8 genes, but there are some people who have a recombinant form of the gene that comes from having both a DR7 and DR5 gene (I'm pretty sure those were the numbers . . . I'll double check if you want me to). Evidently the combination of both of those genes creates a situation where celiac can kick in. (Aren't bodies interesting?)

So, yes, you could have the disease even if no one in your family has it. HOWEVER, it is much more likely that there are members of your family who have symptoms of celiac disease and simply haven't talked about it. Before this diagnosis, how likely were you to go around talking about your bowel movements at a family dinner? It just doesn't make the conversation flow well! Besides that, not all people with celiac present with diarhea or even anxiety/depression.

Question 2: Probably the reason that spelt/rye/ etc. have caused you problems is because of gluten. Other (perhaps smaller) types/amounts of gluten may not be causing you the same obvious reactions, but that doesn't mean that they aren't causing you any problems at all.

This is fascinating information--thanks for sharing!