Need Suggestions On What To Do Next...

[yogatwinmom]

I started seeing a new ND for my hypothyroidism (Hashimoto's) and she mentioned that I ought to get the IgG food intolerance testing done since my 5 year old daughter was off the charts for dairy and eggs. I got my results a few weeks ago and holy moly I reacted to TWENTY-FIVE foods! My worst were all the gluten products (oats, rye, barley, wheat, etc). I also was high for diary, eggs and yeast. So I started a total elimination diet of yeast, eggs, dairy and gluten. After 10 days I was down nine pounds and feeling much better. Last week I had HALF of a vegan cookie (so no eggs or dairy) and within an hour I was sick as a dog, and it lasted 3 hours. It gradually wore off and I felt fine. Well yesterday I had about 1 Tbsp of dairy creamer in my coffee. I thought since it was such a small amount I'd been fine...um no. I got sick again! This time it was a lot more immediate and lasted MUCH longer (a day and a half). I'm just feeling better this afternoon.

So I'm not sure if I need to proceed with testing for Celiac disease? I've always had low iron/ferritin levels (my ferritin has been as low as FIVE) and B 12 levels. I'm on B12 shots and take an RX for iron that I take with Vit. C. I know that the testing may not be accurate if I've been eating gluten free for awhile. Correct?

My ND wants me to do testing for leaky gut but not sure it's even necessary. I know what foods bother me now, so I don't eat them. My diet consists of fruit, veggies, fish, chicken, pork and beef.

So I just don't know what to do next? I feel like if I have a Celiac disease dx then people will take things more seriously.

Thanks for all your help! I look forward to learning my way around this forum.

Yogatwinmom

[sandsurfgirl]

Hey you! You made it here, if this is who I think it is. I emailed you some more info.

Heather

[ravenwoodglass]

Gosh I wish ND's would refer folks to their regular doctors for a celiac panel before they do an elimination! If you feel you need an 'official' diagnosis you really need to get back on gluten for a couple months then test. That said if you are doing well gluten free and then challenge it for a week that should be quite telling as far as your body is concerned. If you have a regular MD who knows of the problems you have been having they may diagnose based on your dietary response and the resolution of symptoms. It is also possible that once you have been gluten free for a while and have healed some of the other intolerances may resolve. Not a for sure thing but I was allergic to almost everything prediagnosis, food and environmental. Within a few months the only things I didn't tolerate are soy and casien.

[Reba32]

now that you're gluten free, any further testing for Celiac disease will turn up negative. You have to have it in your system for the tests to be positive if you have the disease.

Based on your improvement on a gluten free diet however, your doctor *may* be able to give you a definitive diagnosis. BUT, because you've also eliminated a lot of other common intolerable foods all at once, you really don't know for sure which one it is that was eliminated that is making you feel better. If you follow. The only thing you can do now really is to challenge. Which could be painful. I was gluten free for about 8 or 9 months, then did an 8 week gluten challenge, and it was incredibly painful. If there was any other way to diagnose Celiac, I would not have done that!

[bridgetm]

I have been suspecting a wheat/gluten sensitivity, but none of my tests have been very telling so I'd like to go gluten-free for a while and then see what happens if I go back on. I've only been gluten-free for a few days (albeit with a few gluten additives and other questionable sources); how long do I keep it up before glutening?

[ravenwoodglass]

I have been suspecting a wheat/gluten sensitivity, but none of my tests have been very telling so I'd like to go gluten-free for a while and then see what happens if I go back on. I've only been gluten-free for a few days (albeit with a few gluten additives and other questionable sources); how long do I keep it up before glutening?

My allergist had me continue the elimination until I was feeling better for 2 weeks. He had me do a true elimination diet though where I was only allowed 5 foods to start with. I was allowed to start adding stuff back after that 2 weeks. Wheat was the second thing I challenged, good Irish girl I am I did potatoes first. Do keep in mind that gluten reactions are often delayed so add gluten back in for a week before you assume that isn't the issue.

[bridgetm]

My allergist had me continue the elimination until I was feeling better for 2 weeks. He had me do a true elimination diet though where I was only allowed 5 foods to start with. I was allowed to start adding stuff back after that 2 weeks. Wheat was the second thing I challenged, good Irish girl I am I did potatoes first. Do keep in mind that gluten reactions are often delayed so add gluten back in for a week before you assume that isn't the issue.

What five foods did you start with? I've cut out a lot of things but I'm still eating rice, rice cakes, rice noodles, potatoes and sweet potatoes (also Irish so replacing bread with potatoes was a natural step), peanut butter, fruits and veggies and all sorts of rice snacks marketed as gluten-free. I'm feeling somewhat better after only a few days, but wonder if I should cut out even more.

[sandsurfgirl]

There is no way I would do an 8 week gluten challenge. Not worth it to me. Maybe challenge it once or twice to make sure, but if you have any reaction whatsoever, then there's your answer. Celiac, gluten intolerance, who cares? If gluten makes you sick, you should not eat it. Period.

I think it's barbaric that doctors ask patients to do that. The minute someone eats gluten and gets violently ill, common sense would say "Hmmmm, I think gluten is making this person sick." But that doesnt' get them the big bucks. Surgeries do. Doing endoscopies is where the money is, not telling people to change their diet so the doc doesn't need to see you anymore. I am VERY cynical about GI docs over this issue. Too many horror stories on this board about ignorant GI's including my own horror story.

The only treatment is the diet so it's not like having blood tests and endoscopies will get you any medication or whatever. There are docs who will diagnose you based on dietary response. That's a valid diagnostic tool.

[ravenwoodglass]

What five foods did you start with? I've cut out a lot of things but I'm still eating rice, rice cakes, rice noodles, potatoes and sweet potatoes (also Irish so replacing bread with potatoes was a natural step), peanut butter, fruits and veggies and all sorts of rice snacks marketed as gluten-free. I'm feeling somewhat better after only a few days, but wonder if I should cut out even more.

My allergist did form the diet to me and my eating habits but here is what he started me with. Plain white rice, turkey, sweet potatoes, peas and cranberry juice. No coffee, tea or other beverages other than water. No spices, sugar or pepper. No butter, no margarine etc. Those five foods in pure form were all I was allowed. I should note that all those starting foods were stuff I rarely ate as the allergist said they would be less likely to cause a reaction.

[bridgetm]

Sandsurfgirl- I wasn't planning on doing that 8 week challenge. I don't think it's worth it either. I haven't seen a GI yet, just going through my primary doctor and he's not too concerned (all he said was "If you eat something that hurts, don't eat it again. Call me if you have any problems."). So I'm going to try gluten-free for a while and then see what happens. My aunt's putting on a big Easter brunch so I'll have to cheat that day anyway (explaining medical problems to my family has never been a good experience). I just want to make it through until then.

Ravenwoodglass- I was also considering beverages when I started the diet. I haven't had coffee or tea for almost a week and haven't found that I really need the caffeine. This makes me wonder if all the yawning and exhaustion may have had something to do with my diet. This diet has been working well so far so I'm not sure that I'll decide to remove anything else. For the first time in months my post-workout abdominal pain is solely muscle and not overpowered by that bloating, cramping pain. We'll just have to see what happens on Easter.

[ravenwoodglass]

This diet has been working well so far so I'm not sure that I'll decide to remove anything else. For the first time in months my post-workout abdominal pain is solely muscle and not overpowered by that bloating, cramping pain. We'll just have to see what happens on Easter.

If what you are doing is working well then just stick with it. I hope you don't get too ill on the holiday. I would try to eat as little actual gluten as you can, if you can eat before you go that might be a good idea. If you need the gluten-free diet you eventually are going to have to tell them. One really good reason is because of the strong genetic nature of the disease. All first degree relatives really should be tested if you are celiac.

[bridgetm]

If what you are doing is working well then just stick with it. I hope you don't get too ill on the holiday. I would try to eat as little actual gluten as you can, if you can eat before you go that might be a good idea. If you need the gluten-free diet you eventually are going to have to tell them. One really good reason is because of the strong genetic nature of the disease. All first degree relatives really should be tested if you are celiac.

The genetic issue is a good point. I'm sure one of them will notice what's not on my plate so there's likely to be some general discussion. I plan to avoid any breads and those obvious gluten sources, but I won't be reading the labels on everything she serves so my biggest risk is the small amounts that might be in anything and everything. My mom heard the plans for the menu last week: plenty of fruit, eggs, ham and simple favorites that should be okay.