Need Some Help...

[string bean]

Okay, I will TRY to be brief, but still give enough details to get some opinions. Last Monday I went to my regular doctor after a weekend of googling. I was convinced I had celiac. She tried to talk me out of the testing, but I requested it anyway. I had the 4 tests in a celiac panel and 3 came back in the normal range. My total IGA was the only thing that was high.

My family thinks I'm a hypochondriac anyway because I am always trying to find something wrong with me. (In my defense, THIS can't be NORMAL. I know I'm getting older, but is this really what it feels like?) Anyway, my doctor still has not called me back, but last Wednesday afternoon, I decided to start a gluten-free diet. I bought trial size HBA products and lots of gluten free cereal! I decided I would try it for a month and see what happens.

By the way, does anyone have DH just on their hands? And, mine is not red bumps like the pictures I see. But, it does itch LIKE CRAZY! And when I say crazy, I mean a straight jacket isn't far from my future when it itches! Could it still be DH?

It hasn't quite been a week yet. My hands were clearing up and my uncontrollable gas has subsided (at least I can tell when I am going to, now, instead of it just surprising everyone in my not so near proximity!) But, my hands started itching again. So, now I'm wondering if maybe it's not celiac/gluten intolerance.

Any advice from those who have been there, done that? I have read many posts on here and am gathering that I just need to stick with the gluten free diet. But, for how long? And as far as my family goes, without a doctor's diagnosis, they will not be very supportive. We do a lot of family gatherings where food is involved. How do some of you handle this? If indeed, I am gluten intolerant, it's not like a diet where you are trying to lose weight and it's "okay to cheat here and there". From what I have read on here, cheating here and there is just not worth it.

Any help would be great! Thanks!

[Reba32]

it can take a few weeks to notice any considerable healing, but usually you will notice some changes almost immediately. Like the cloud of noxious gas is gone within a day or so.

I don't have DH so I can't really comment on that, but you may want to make sure that your soaps, lotions, shampoos and cosmetics etc are all free of gluten ingredients. I tossed out pretty much everything and went shopping for new stuff.

My husband is also not very supportive, even after my positive diagnosis. He says he is, but he's not really. Words are one thing, actions are something else entirely. I actually had been gluten free for several months, but he complained that HIS life was hell because I wouldn't eat bread. So I did the gluten challenge, which made MY life hell for 8 weeks. Got a positive dx and he still complains. Damned if I do, damned if I don't. It's my guts, I won't eat a hamburger or a plate of spaghetti just to please him.

He contaminated a cooking spoon the other day when I made him spaghetti and he was about to put it in the pot of sauce that I was about to put on my squash! I grabbed the spoon from him and threw it in the sink and said he'd contaminated it now and I can't use it. He said "what are you talking about?" I honestly don't know how many times I have to explain cross contamination. But so far it's been pretty much every single meal time.

No, "cheating" if you have gluten intolerance or Celiac disease is definitely NOT recommended! There are LOTS of options for gluten free alternatives to "normal" foods. Even stuff that your family will like and appreciate as good food. Whenever you have family gatherings, if they're totally unsupportive, take your own food, and take enough to share. It's not rude to decide that you don't want to end up in hospital after eating a piece of cake or a slice of pizza. It's just sensible!

[jackay]

it can take a few weeks to notice any considerable healing, but usually you will notice some changes almost immediately. Like the cloud of noxious gas is gone within a day or so.

My husband is also not very supportive, even after my positive diagnosis. He says he is, but he's not really. Words are one thing, actions are something else entirely. I actually had been gluten free for several months, but he complained that HIS life was hell because I wouldn't eat bread. So I did the gluten challenge, which made MY life hell for 8 weeks. Got a positive dx and he still complains. Damned if I do, damned if I don't. It's my guts, I won't eat a hamburger or a plate of spaghetti just to please him.

I also deal with a spouse who is not supportive. He just doesn't get it either. He says he cleans up crumbs but I see them everywhere. When we share meals together, I watch carefully and if he puts his spoon or fork in something, I just don't eat it. I dish up my meals first but watch to see if the leftovers get cc. I am very, very careful because I know he isn't. I do all my own cooking. When he cooks, it is only for himself as I don't trust his "cleanliness".

I truly think if my spouse found out he was gluten intolerant, he wouldn't make any changes in his lifestyle. He is so gluten dependant that he'd just suffer and "enjoy" his foods. I wouldn't be surprised if he is gluten intolerant as he needs to take a stool softener twice a day just to have normal BMs. Maybe he'd feel differently if he suffered from insomnia, anxiety, depression, diarrhea and muscle pain.

[string bean]

Thanks for the replies! I was doing much better (it's only been two weeks), but the bloating and gas came back today. I have checked everything in my cabinets unless there is gluten hidden in something. During this gluten free trial period, will the episodes come and go or just gradually get better. I have only been eating my food and it gets better and then comes back.

And, my doctor FINALLY called me yesterday. She said everything was normal. I questioned the high total Iga that I had and she said that celiacs are Iga deficient and since mine was high I had nothing to worry about. I have read about the Iga deficiency, which I am obviously not. But, in my "un" professional opinion, I would think that anything out of the normal range, rather high or low, would mean something. Any other opinions on my lab?

[Lynayah]

Thanks for the replies! I was doing much better (it's only been two weeks), but the bloating and gas came back today. I have checked everything in my cabinets unless there is gluten hidden in something. During this gluten free trial period, will the episodes come and go or just gradually get better. I have only been eating my food and it gets better and then comes back.

And, my doctor FINALLY called me yesterday. She said everything was normal. I questioned the high total Iga that I had and she said that celiacs are Iga deficient and since mine was high I had nothing to worry about. I have read about the Iga deficiency, which I am obviously not. But, in my "un" professional opinion, I would think that anything out of the normal range, rather high or low, would mean something. Any other opinions on my lab?

String bean: If either your IgA or IgG comes back positive, YOU ARE GLUTEN INTOLERANT. This is very important. Just because a person doesn't have Celiac doesn't mean that gluten doesn't make that person very, VERY sick.

For more information, please read Healthier without Wheat by Dr. Stephen Wangen. In addition to addressing Celiac Disease and wheat allergies, this book addresses the non-celiac gluten intolerance issue.

(I have promoted this book so much that I worry that someone will think I've been hired to do it . . . no, absolutely not . . . it is just that I am a woman who struggled SO MUCH with being told, "Sweetie, you don't have Celiac, so you don't have to worry," when in fact, I did have to worry, BIG TIME.

Take a look at my symptoms in my signature, below, and you'll see what I mean.

Wangen's book helped me understand that I was not going crazy . . . and that the doctors were wrong . . . and it helped change my life for the better, so I mention it a lot.)

I am non-celiac gluten intolerant. I had a biopsy, gene test and all the rest, and they came back negative. However, my gliadin level came back very high. I don't remember if it was IgA or IgG, but I know that IgA and IgG need to be taken very seriously.

Additionally, I had all the other symptoms of Celiac disease, including malnutrition.

Please, please, please, keep on top of this! Perhaps a second opinion is in order -- one from someone who specializes in gluten-intolerance issues?

Good for you for posting your question. I hope it will help others, too. Please keep posting here and let us know how you are doing.

Sending a hug,

Lyn

[string bean]

Lyn

Interesting...Where would I find a copy of this book? Our local library does not have it. I am leaving on a trip tomorrow and thought it would be a good time to read it. Thanks for the info about the Iga. I have been confused with the difference between Total Iga and the Gliadin Iga. Do you have anymore to say about that? I seemed to be improving, but the last two days I have been bloated and gassy and my hands have started itching again (although not as intense). I feel sure I have not eaten any gluten, though maybe I'm wrong. I'm still trying to figure out if maybe the symptoms come and go while my body is "making the switch".

I can't help but be curious about this book. I told several people today that I felt like I was in a fog. Like I had a headache, but not really. Just felt kind of weird. Then I read your signature that says BRAIN FOG. It was actually encouraging!

Let me ask yet another question....Do we ever hear from those that think they are gluten intolerant, eat gluten free and then do the gluten challenge and are fine??? I'm wondering if it is some kind of epidemic and most of the population is gluten intolerant to some extent. Anyway, that may be one that just ends up being rhetoric.

Thanks again!

[Wolicki]

String Bean

My IGA was the only abnormal lab. And I was sick, sick, sick, and it all went away off of gluten. Like you, I felt better right away. Then I started feeling bad again. It turned out to be secondary food intolerances. Keep a food diary to see if that is what your problem is. It seems most Celiacs have issues with dairy, nightshades and corn, at least temporarily. The good news is, most of them go away after a period of abstinence.

Good luck to you!

[mommida]

Not all Celiacs are IGA deficient! Some statistics say only 30% of Celiacs are IGA deficient.

[Lynayah]

Lyn

Interesting...Where would I find a copy of this book? Our local library does not have it. I am leaving on a trip tomorrow and thought it would be a good time to read it. Thanks for the info about the Iga. I have been confused with the difference between Total Iga and the Gliadin Iga. Do you have anymore to say about that? I seemed to be improving, but the last two days I have been bloated and gassy and my hands have started itching again (although not as intense). I feel sure I have not eaten any gluten, though maybe I'm wrong. I'm still trying to figure out if maybe the symptoms come and go while my body is "making the switch".

I can't help but be curious about this book. I told several people today that I felt like I was in a fog. Like I had a headache, but not really. Just felt kind of weird. Then I read your signature that says BRAIN FOG. It was actually encouraging!

Let me ask yet another question....Do we ever hear from those that think they are gluten intolerant, eat gluten free and then do the gluten challenge and are fine??? I'm wondering if it is some kind of epidemic and most of the population is gluten intolerant to some extent. Anyway, that may be one that just ends up being rhetoric.

Thanks again!

Hi, String Bean:

Any bookstore, online or otherwise, should either have it or be able to order it for you. It really is worth having, and it might help clear up a lot of your questions.

Going from feeling better to worse to better to worse is normal. My gliadin levels are still high desite going gluten-free. It can take a lot of time before the body responds and the gliadin levels start to lower. My doctor told me it might take as much as a year before I start to really heal -- maybe much longer.

In the meantime, I have good days and not-so-good, and I often find myself confused as to what I might have done wrong. My gut feeling (pun intended) is that it isn't always gluten that's the problem.

As mentioned above, having sensitivities to other foods is common. I am thinking of asking for additional testing to see if I am intolerant to other foods as well.

Your question about doing the gluten challenge and then testing as fine is a good question. Unfortunately, there isn't a cut-and-dry answer to it.

Some people test fine because their tests have been poorly run, misread, OR because their doctor only looks at the Celiac side of things and not at the gliadin level.

Some people test fine because they didn't eat enough gluten or eat gluten long enough for the body to react.

The list goes on and on. Of course, some will test fine . . . because they're fine!

To make things even more confusing: Some gluten-intolerant folks are highly symptomatic while others have no symptoms whatsoever. Still others have "fuzzy" symptoms that can easily be misinterpreted -- things like headaches or body aches are such universal complaints , it can be easy to overlook gluten-intolerance as a possibility.

I often wonder how many billions of dollars are being spent on drugs that mask symptoms rather than cure the problem.

For me, I had a biopsy and gene test as well as bloodwork. The only thing that came back positive was my gliadin level, yet I suffered horribly from every celiac symptom except villi damage (including malabsorption from diarrhea).

Medical science still has a lot to learn about gluten-intolerance, too. Not all the answers have been discovered yet.

[string bean]

On the temporary food intolerances...what are nightshades? To my knowledge, I have been very good at eliminating gluten from my life (not just my diet). But I went to a ladies' gathering for dinner the other night and about 10 minutes after dinner, I started bloating up! I brought my own turkey breast and put it atop a double serving of salad. I had marshmallows and fondue and fudge sauce for dessert. I checked the recipes for those the next day and neither of them had gluten (and, again, I say to my knowledge).

Does celiac just pop up in your life or should I have been experiencing symptoms for a long time? What triggered my own diagnosis was finally dertimining that my rash was DH, but I have only had it for about a year. I have a lot of the other symptoms, too, and they have "been around" in some way or another for many years---written off as depression and just being the "gassy" one. Also, I am VERY thin in appearance, but only I (and a few close others) know that I have a pot belly--the constant bloating!

So, anyway, back to the dinner. Can I be THAT much more sensitive now that eating from the fondue fountain that was shared with rice krispie treats, pound cake, and pretzels made me gassy and bloated so fast?

[kareng]

So, anyway, back to the dinner. Can I be THAT much more sensitive now that eating from the fondue fountain that was shared with rice krispie treats, pound cake, and pretzels made me gassy and bloated so fast?

Pound cake is very cumbly. I'm sure you got some crumbs from the chocolate. When we do chocolate dipping, we use a spoon to put some on a plate or bowl for each person.

[Lynayah]

On the temporary food intolerances...what are nightshades? To my knowledge, I have been very good at eliminating gluten from my life (not just my diet). But I went to a ladies' gathering for dinner the other night and about 10 minutes after dinner, I started bloating up! I brought my own turkey breast and put it atop a double serving of salad. I had marshmallows and fondue and fudge sauce for dessert. I checked the recipes for those the next day and neither of them had gluten (and, again, I say to my knowledge).

Does celiac just pop up in your life or should I have been experiencing symptoms for a long time? What triggered my own diagnosis was finally dertimining that my rash was DH, but I have only had it for about a year. I have a lot of the other symptoms, too, and they have "been around" in some way or another for many years---written off as depression and just being the "gassy" one. Also, I am VERY thin in appearance, but only I (and a few close others) know that I have a pot belly--the constant bloating!

So, anyway, back to the dinner. Can I be THAT much more sensitive now that eating from the fondue fountain that was shared with rice krispie treats, pound cake, and pretzels made me gassy and bloated so fast?

If you Google "nightshade vegetables" you'll find there is a lot of information out there. Nightshades include potatoes, tomatoes, peppers and more. Some folks feel that not eating them may help reduce inflammation.

The gathering you attended: Often, cross-contamination is the issue when it comes to getting glutened. Just because a recipe is gluten free doesn't mean that the person who made it did it in a gluten-free area of a kitchen.

For example: Someone brings a dessert in a plastic container. In the past, the plastic container was used to hold everything from bread stuffing to cake. Even though the container may have been carefully washed, plastic can hold gluten. So, cross-contamination may happen.

Let's say someone is baking with flour. Then the person makes a gluten free something. The person uses a fresh bowl and spoon, but puts the spoon on the counter. The counter has a tiny speck of flour left on it, and the underside of the spoon comes into contact with it. Then the spoon goes back into the bowl and . . . you guessed it, cross-contamination.

Yep, unfortunately, it's just that easy to get "hit."

[NYJanice]

String Bean

My IGA was the only abnormal lab. And I was sick, sick, sick, and it all went away off of gluten. Like you, I felt better right away. Then I started feeling bad again. It turned out to be secondary food intolerances. Keep a food diary to see if that is what your problem is. It seems most Celiacs have issues with dairy, nightshades and corn, at least temporarily. The good news is, most of them go away after a period of abstinence.

Good luck to you!

I was gluten free for several months before finding the right doctor and getting tested. Everything was normal regarding celiac except one of the two genes was positive. Allergy tests showed a level 2 allergy to wheat. That would explain why I can have a beer now and then with no problem, but one croissant (I just HAD to try)causes a return of my symptoms...gas, diarrhea, brain fog and restless legs.

I also tested positive for SIBO...small intestine bacterial overgrowth...after a breath test. A two week course of antibiotics and probiotics got rid of that.

I do not have a problem with small amounts cross contamination, but my wonderful husband, who does all the cooking, is very careful. At first he thought it was a huge inconvenience, but he has realized that many gluten free ingredients taste just as good as the "real" one in a recipe; and he makes two pots of pasta. I am blessed!