Please Give Me Some Advice

[Dru]

I am on an elimination diet and have just tested gluten and reacted quite badly to it. I have had headaches, skin irritation, and severe stomach and intestinal pain along with some other GI issues. It has also made me very tired all the time and yet unable to fall asleep easily at night (so I am up until 1 AM and then take a long nap every afternoon and am tired even when I sleep in on the weekends and after the naps).

I recently realized that every other food I have reacted to on the elimination diet is a food that I have tested allergic to with a skin prick test in the past (1992, 2001, and 2007). I have never tested allergic to wheat. I did have bloodwork done for celiac and it all came back in the normal range (it was done about a month after all of my major symptoms began).

My question is: what do I need to ask when I see my Dr tomorrow?

I am thinking that I am either severely gluten intollerant (the gluten reactions are worse than any of my other food reactions) or have celiac and the blood test was either wrong or done too soon after my symptoms began. What should I be asking my Dr to test for or do for me to figure this out?

Part of the reason that I am asking is that I know that I will not stick to a gluten free diet if I am not a celiac (I have a long history of becoming very lax and eating things that I am "not very" allergic to).

Should I ask for genetic testing to rule out Celiac?

Should I just keep eating gluten and getting sick so they can do a biospy?

Are there any other options?

Thanks for reading the long post.

[aikiducky]

When was the last time the blood test for celiac was done?

I'm thinking that if it was more than a half year ago you could ask to repeat it.

Pauliina

[happygirl]

If you are still eating gluten, then I would ask for the full Celiac blood panel to be run. Many drs' don't run the full panel.

AGA IgA and IgG

total serum IgA

tTG

EMA

Ask about Crohn's, Ulcerative Colitis, Microscopic Colitis, H.Pylori (causes ulcers), parasites, etc. You could have multiple problems, or have something that is not gluten related....always best to cover all your bases.

[Dru]

I guess I should have been clearer on this but I have not been eating gluten since early July when I began an elimination diet to identify my food allergies. The only gluten I have had since then is the amount that I have eaten over the past three weeks to test a reaction to it (an even that was not a lot).

In answer to the other question, I was last tested in April and my Dr did not do a full panel. He tested for

TTG (IGA)

Gladin IGA and

IGA serum.

All of them came back in the normal range but I had only had symptoms for a month when he tested.

I am really trying to figure out if there are other tests that he can do to rule out or rule in the likelihood of celiac so that I don't have to just eat gluten for months in order to be tested again.

Would a gene test be useful?

Should I have him test for certain other deficiencies (iron, calcium, etc)?

Thanks.

[aikiducky]

Well, vitamin deficiencies would point to an absorption problem so that could be a clue, but not proof positive.

Early celiac is just really really hard to "prove" with a test, because the current tests rely on there already being some damage.

A biopsy might still show some damage, but it could be you never even developed enough in the first place since you just started having symptoms recently.

Basically I'm afraid your asking for something that doesn't exist.

A gene test doesn't prove anything, about 30% or so of the American population have a gene for celiac, and about 5% (as far as we know at the moment) of biopsy proven celiacs don't have the genes! Having one of the major genes for celiac makes it at most a bit more likely.

If you're not willing to go on a gluten filled diet, you might have to go with what your elimination diet tells you. It's a valid diagnostic tool in itself.

Just so you know where I'm coming from, I was in a similar situation - I started having symptoms, thought of celiac, went gluten free for six weeks, felt better, tried going back on gluten for testing, day one was in unbearable pain, had a blood draw the same day. Of course it was negative. I couldn't even imagine continuing to eat gluten so I decided I knew enough.

Pauliina

[Dru]

Early celiac is just really really hard to "prove" with a test, because the current tests rely on there already being some damage.

A biopsy might still show some damage, but it could be you never even developed enough in the first place since you just started having symptoms recently.

Basically I'm afraid your asking for something that doesn't exist.

A gene test doesn't prove anything, about 30% or so of the American population have a gene for celiac, and about 5% (as far as we know at the moment) of biopsy proven celiacs don't have the genes! Having one of the major genes for celiac makes it at most a bit more likely.

If you're not willing to go on a gluten filled diet, you might have to go with what your elimination diet tells you. It's a valid diagnostic tool in itself.

So, I went to see my Dr this morning and he basically told me the same thing. He gave me a choice between getting the (very expensive) genetic testing and going to see a specialist. I chose the specialist and he referred me to Dr Rudert in Atlanta. She is also very expensive because she does not take any insurance, but she is supposed to be very good.

My Dr. was actually really good and spent about an hour with me discussing the results of my elimination tests and the symptoms that I had when I went back to eating gluten. He decided that he would run some blood tests to determine whether I have some sort of connective tissue disorder because of the joint pain that returned when I went back to eating gluten.

He also told me that he had been to a seminar on celiac disease since the time he did my blood test and found out that the testing that the lab he uses is doing does not include one of the better tests for celiac. He basically told me that my testing may have been done too soon and that, even if it was not too soon it was not the complete panel that he (now knows) he should have run. I thought it was really great of him to admit that. He was actually scheduled to meet with the lab director today to see about changing the testing they use for the celiac panel when it is ordered!

Anyway, I am hoping that Dr. Rudert will be able to tell me where to go from here. I think I just need to see a Dr. who is really knowledgeable and can tell me what to do next.

[aikiducky]

Your doctor sounds like a really good one! I hope the specialist is going to be as nice.

What are you planning to do in the meantime, are you going to eat gluten free or go back on gluten?

Pauliina

[Dru]

What are you planning to do in the meantime, are you going to eat gluten free or go back on gluten?

I guess I will be staying gluten free.

I still have to get over the reaction that I had from testing barley on Sunday and Monday. The wierd thing is that things seem to have gotten worse over the past two days rather than better. I guess it could be a delayed reaction. I can't find anything in my food diary to suggest that I ate something else that could be causing all of my GI problems, rash, dizziness, and joint pain.

My dietician still wants me to try some wheat, just a small amt, to see how I react. I guess I will be eating that as soon as I recover from the barley.

I see the Dr. two weeks from today, so I should have recovered enought to have tested the wheat by then but I doubt I will eat much wheat (I only had 2 small servings of barley, maybe 1/2 cup cooked each time).

I am hoping that the Dr will tell me whether or not I need to keep eating gluten to get tested or to stop eating it and assume I have celiac disease or ??? (I'm not sure what my other options would be).

Any advice or suggestions you have would be welcome.

[aikiducky]

The doctor can't really tell you whether or not you should go back on gluten and get tested- that's up to you. The two choices you listed are the two I'm aware of, so basically you already know what your choices are.

Assuming that you indeed have celiac - being gluten free for a while like you have and then having as much gluten as there is in two servings of barley could easily result in a reaction that lasts for a while, so your symptoms could still be from the barley. I hope it gets better soon!

Pauliina

[Dru]

What are you planning to do in the meantime, are you going to eat gluten free or go back on gluten?

I guess I will be staying gluten free.

I still have to get over the reaction that I had from testing barley on Sunday and Monday. The wierd thing is that things seem to have gotten worse over the past two days rather than better. I guess it could be a delayed reaction. I can't find anything in my food diary to suggest that I ate something else that could be causing all of my GI problems, rash, dizziness, and joint pain.

My dietician still wants me to try some wheat, just a small amt, to see how I react. I guess I will be eating that as soon as I recover from the barley.

I see the Dr. two weeks from today, so I should have recovered enought to have tested the wheat by then but I doubt I will eat much wheat (I only had 2 small servings of barley, maybe 1/2 cup cooked each time).

I am hoping that the Dr will tell me whether or not I need to keep eating gluten to get tested or to stop eating it and assume I have celiac disease or ??? (I'm not sure what my other options would be).

Any advice or suggestions you have would be welcome.

[aikiducky]

How are you doing Dru, any change?

Pauliina

[hathor]

Have you ruled out Enterolab testing for some reason? That is a more sensitive test which will show problems before they would show up with blood testing, at least that is the theory. (Some are reluctant to endorse Enterolab because Dr. Fine hasn't published yet.) They say that the testing is valid at least up to one year after consuming gluten.

Two articles:

https://www.celiac.com/st_prod.html?p_prodid=1417

Open Original Shared Link

What is publicly available about the testing:

Open Original Shared Link

Enterolab will tell you whether you have gluten intolerance or not. This is a larger category than celiac. So even if you don't have the celiac genes or have the genes but antibodies haven't shown up in the blood or villous blunting hasn't occured ... yet ... you can still have a problem.

There are some celiacs that don't have the accepted celiac genes. There are also doctors who think there are other genes that are associated with gluten problems.

Even if Enterolab results aren't a slam dunk because of lack of peer review of the test and doctors disagreement over even the existence of such a beast as non-celiac gluten sensitivity, you may want to go this route. I noticed a positive response to eliminating gluten. But I felt I needed some test result to stick with it.

If I had gone with normal medical testing, I would have been told I couldn't have celiac because I don't have the genes. Turns out I've run across a number of people on this and another forum who have the genes I do and problems with gluten.

However, in your case, I am reminded of the old joke about, "Doctor, it hurts when I do this ... well, then, don't do that." You suffer when you eat gluten. You know that. Your reaction doesn't seem equivocal or psychosomatic (my husband thought mine was ... so part of the reason for my Enterolab testing was to shut him up ). You don't need a doctor's permission to stop doing something that causes you to suffer.

Have enough glutenings, I don't think you will be tempted off the diet. The symptoms seem to be worse if one has been gluten free.

[Dru]

Have you ruled out Enterolab testing for some reason? That is a more sensitive test which will show problems before they would show up with blood testing, at least that is the theory. (Some are reluctant to endorse Enterolab because Dr. Fine hasn't published yet.) They say that the testing is valid at least up to one year after consuming gluten.

Enterolab will tell you whether you have gluten intolerance or not. This is a larger category than celiac. So even if you don't have the celiac genes or have the genes but antibodies haven't shown up in the blood or villous blunting hasn't occured ... yet ... you can still have a problem.

There are some celiacs that don't have the accepted celiac genes. There are also doctors who think there are other genes that are associated with gluten problems.

Even if Enterolab results aren't a slam dunk because of lack of peer review of the test and doctors disagreement over even the existence of such a beast as non-celiac gluten sensitivity, you may want to go this route. I noticed a positive response to eliminating gluten. But I felt I needed some test result to stick with it.

If I had gone with normal medical testing, I would have been told I couldn't have celiac because I don't have the genes. Turns out I've run across a number of people on this and another forum who have the genes I do and problems with gluten.

However, in your case, I am reminded of the old joke about, "Doctor, it hurts when I do this ... well, then, don't do that." You suffer when you eat gluten. You know that. Your reaction doesn't seem equivocal or psychosomatic (my husband thought mine was ... so part of the reason for my Enterolab testing was to shut him up ). You don't need a doctor's permission to stop doing something that causes you to suffer.

Have enough glutenings, I don't think you will be tempted off the diet. The symptoms seem to be worse if one has been gluten free.

I have not gone the Enterolab route yet because I don't have a lot of money (my husband and I are both currently students and we have a 2 year old) and I keep hearing mixed things about their reliability. I too feel that I need some sort of test result in order to stick to the diet long term, so I may go that route when the money is available.

I am currently still feeling bad and it has been a week since I ate the barley. I was beginning to question the whole elimination diet since it seems odd to me that I would still be sick from the barley and I have not eaten anything else that I'm not supposed to, but I guess it could still be that causing my problems based on what you have said about reaction times. I have been terribly dizzy and had so much joint pain that my Dr ran blood tests for connective tissue disorder and rheumatoid arthritis (all came back negative). He also ran a CBC and I'm not sure what the results are from that yet.

I see the new GI Dr in less than 2 weeks and she is supposed to be an expert on celiac disease (Dr. Rudert). I goggled her name and she has been quoted in a number of celiac articles and such. I think I will at least find out if she has any ideas for anything else that could be causing any of my problems or any other suggestions. If she can't tell me anything new, I guess I'll order the Enterolab tests as soon as I can and have them test for the genes too.

I am also trying to get my mom to get her dr to run the blood test on her since she has a lot of the symptoms that people commonly seem to post about on here.

I may also have my son's blood tested since I recently measured him and realized that he has only grown 1/2 inch in the past 9 months (he is 28 months old now). I put his current height on the growth chart and he has dropped from the 10th percentile for height down to below the 5th percentile (he really is no longer on the chart at all). He was the 50th percentile at birth and has been hovering around the 10th since around 6 months old. His weight is a bit better and he is not super skinny but he does get this huge bloated belly after he eats mac and cheese. I hope that he doesn't have it, but I have to find a reason why he is not growing at a normal rate and that seems like a place to start looking.

As for me, if I manage to feel better before I see the dr I will test wheat just to finish out my elimination diet and make sure that I am not just allergic to oats and barley but fine with wheat (but I'm guessing that is not the case).

[aikiducky]

I'm glad your planning to test your son as well. Of course it's not something to wish on a child but IF he has celiac it's much better to know it now, so that he has a chance of absorbing all the nutrients he needs while he grows up.

Do keep us updated when you see your doc will you?

Pauliina

[Dru]

I'm glad your planning to test your son as well. Of course it's not something to wish on a child

I am hoping that he does not have it and I would never wish it on him, but it would be better for him to know sooner rather than later.

As for me, I'll keep you posted. I still have about a week and a half before I even see the new GI dr.

Today has been very strange and is making me question everything. I had insomnia so bad last night that I was up until nearly 4 AM. Thanks to a late class schedule and my husband getting up with our son, I was able to sleep until around 9:30 but even then I kept waking up. When I finally got up my stomach hurt and I couldn't decide whether to eat or not. I had a banana. About an hour later I had some grapes and about an hour after that I had an apple. By noon my entire digestive track when on strike and I have been having one of the worst days I have had in the past 3 months since around 1 PM. I tried eating lunch (rice pasta with tomato sauce and mushrooms). I don't think that lunch helped but it was leftovers that I have eaten for 2 other meals without getting sick. Anyway, not sure what to think about this since the last time I ate anything that I know I should not have eaten was a week ago. I did have some rice on Sat night at the Taco Stand that they thought was gluten free but could not tell me for sure. It could also have had soy or corn or dairy in it ....

Sometimes I just feel like a huge mess. I almost hope I have celiac disease just so I know what is wrong and can focus on getting better and getting my body back to normal rather than always guessing what I did wrong to make me sick.

[mftnchn]

Dru, I think it is very possible that you are still reacting to barley. I have seen folk on this forum talk about 2 week reactions and even 1 month reactions to a much smaller amount of gluten than you ate in your testing.

I sure hope you feel better soon.

[Dru]

Dru, I think it is very possible that you are still reacting to barley. I have seen folk on this forum talk about 2 week reactions and even 1 month reactions to a much smaller amount of gluten than you ate in your testing.

I sure hope you feel better soon.

Thanks. I hope I feel better soon too I think I have reached the point where I am sick of being sick.

Is it possible to suddenly get a really bad GI type reaction (bloated, gassy, D) a week after eating the food? I had reacted with C and stomach and intestinal pain, fatigue, rash, etc. when I ate the barley a week ago, but this problem just started today. I'm not sure how all of these delayed reactions work.

[aikiducky]

Yes that's possible! The way my reactions go I usually feel really bad for a couple days initially, then I start to feel somewhat better, then exactly one week later I get a "peak" and after that I really start to improve. In the beginning I always thought I had glutened myself again until I figured this pattern out.

Pauliina

[Dru]

Yes that's possible! The way my reactions go I usually feel really bad for a couple days initially, then I start to feel somewhat better, then exactly one week later I get a "peak" and after that I really start to improve. In the beginning I always thought I had glutened myself again until I figured this pattern out.

I am so glad you said this. I thought I was going crazy since I felt so good on Saturday, a little worse on Sunday and then plunged into this horrible reaction yesterday (a whole week after I last ate the barley). I am still feeling horrible today, so hopefully this will pass soon, but at least I can blame it on the barley. Thanks so much for this very helpful insight. I may never have figured this out on my own.

[aikiducky]

I'd say if you still feel horrible at the end of the week though that you should start to consider other possibilities. But lets hope that won't be the case!

Pauliina

[Dru]

I'd say if you still feel horrible at the end of the week though that you should start to consider other possibilities. But lets hope that won't be the case!

Pauliina

Sorry not to get back to you on this comment. I did eventually feel better with the exception of some lingering dizziness and fatigue.

So, Sunday (yesterday) I woke up and decided that I should try wheat since I am seeing the GI Dr. that I was referred to this Thursday and still have not got up the nerve to eat actual wheat. Plus, I needed to finish my elimination diet and that was my last food. I am now home in the middle of the day after not being able to make it through a full day of work. My GI problems have gotten progressively worse throughout the day.

The only good news is that I finally found the food that apparently was making me really sick before I started the elimination diet. I have found other foods that I did not react well to, but none that recreated the entire miserable experience that I had been having prior to eliminating a lot of foods.

I'm actually glad that I did this, despite being so sick today, because I was really starting to think that this was all in my head and that I did not need to see the specialist. Now I know that I need to see her because I either have celiac disease or a bad case of gluten intolerance. It looks like I will be gluten and dairy free for a long time...unless I end up eating it for a while to get properly tested (still not sure I can handle that much time being sick).

Also, my son went in for a check up today and I asked his Dr to order a celiac blood screening for him. The Dr was very willing to do it in light of my problems and even knew what I was talking about. I was shocked because his Dr is very old and very old school, but I won't complain.

Just wanted to update. I'll post again once I have seen the GI Dr on Thursday.

Thanks again for all of the advice and support so far. It looks like I'm going to be on here needing even more in the months to come.

[aikiducky]

Thanks for the update! I know what you mean about being glad to know even if it means you have to be sick for now.

I guess the fact that you reacted both to wheat and barley does point to gluten. Good luck with the doc on Thursday and I'll look for your post then!

Pauliina

[Dru]

Good luck with the doc on Thursday and I'll look for your post then!

Pauliina

I went to see Dr. Rudert today. She is awesome and very knowledgeable. She told me that I have bacterial overgrowth from the long round of antibiotics that I was on earlier this year for a sinus infection that would not go away for about 3 months. She also told me that I am either severely gluten intolerant or I have celiac disease.

I kept eating a bit of wheat this week so that I had the rash I get from it when I saw her. This was problematic yesterday because it causes such severe dizziness that I did not make it work and spent the whole afternoon on my couch. She was very thorough and listened to my entire medical history before determining that I was either intolerant to have celiac disease.

The problem still remains that I have been gluten-free for nearly 3 months other than my testing oats, barley, and wheat on the elimination diet. She told me that I could do genetic testing to rule out celiac disease but that testing positive for one or both genes would not provide a diagnosis. She also told me that it is likely that I would not have any damage at this point to show up if they did a biopsy, but there is a remote chance that it could still be worthwhile. In the end, we agreed that I will get genetic testing done through Kimball Labs and schedule a biopsy ASAP if I have one or both genes. The biopsy might come back negative even if I have it, but if I am ever going to have a chance to get a positive biopsy it is now.

She strongly urged me not to start eating gluten again just to get tested. She says that she never recommends this to anyone and that it is clear that I react too badly to gluten for that to be an option. I guess I'm going gluten free for good.

I hate uncertainty and my sister just told me that my mom, who is a nurse who spent the past 10 years working in GI, thinks that this is all crazy and that there is nothing wrong with me. I asked my mom to get tested and that is, I think, part of why she is so against this. When Dr. Rudert asked about my family history and I described my mom and her health history, Dr Rudert told me to get my mom to get tested. That made me feel better but will not likely convince my mom of anything.

My sister is waiting to see if I have any of the genes because she is pregnant and wants to do the blood test just to make sure that she doesn't have it. I think she is afraid that she will be one of those people with no symptoms until something happens to the baby. At least she doesn't just think I'm insane.

My husband took my son to the lab this morning to get my son's blood drawn for celiac disease screening. He is 2 so I know there is a higher risk of a false negative, but we want to at least try to test him. My husband is convinced that I have celiac disease and that I have passed it along to our very cute but very short son. Dr. Rudert told me today that in some countries in Europe my son's height alone would be cause to have him screened without any other symptoms. I guess they are more aware of celiac disease over there.

The good news is that my husband is supportive and does not think I'm crazy. The down side is that I may never get a clear diagnosis and my mother will never believe me if I don't test positive (or maybe even if I do). I guess its a good think I live with my husband and not with her

Anyway, thanks for reading such a long post. Feel free to weigh in with any thoughts or advice.

[aikiducky]

Well my first thought is that you have an unusually sensible doctor!

Your mom will have to be allowed to go through her own denial....either she'll get used to the idea in time or she won't, you can't really do much about it. It might seem unlikely now but remember that if you're going gluten free for life, that means in ten years you're still going to be gluten free, and by that time it might just seem normal to everybody around you.

It's important that you're consistent in the beginning, don't let anyone guilt you into cheating, that will just teach other people to not take your diet seriously. If you take it seriously so will everybody else with time. Well I guess with the elimination diet that you've been on you already know all this...

Thank goodness for understanding husbands... Thanks for the update!

Pauliina