Need Advice Regarding Gluten Challenge And Timing Of Endoscopy (Urgent!)

[basilicious]

Hello,

I am being evaluated for celiac and need advice regarding the timing of my endoscopy. A little back story: After being sick in July and not getting a good explanation for it or the diffuse symptoms I've been experiencing (and accumulating) for some time, I began a food journal and pinpointed gluten as a likely culprit.

The realization naturally made me scale back my consumption of gluten, but since I had read enough to know that some gluten needs to be in my system for diagnosis/evaluation, I didn't go completely gluten-free. This was just before Thanksgiving, and I dramatically reduced my gluten consumption to what a non-celiac would consider very small - incidental exposure through sauces, some non-certified oats, and a few crackers and cross-contaminated foods here and there. Again, that has generally been the nature of my gluten consumption since Thanksgiving.

At the beginning of January, I had the initial celiac blood test, and they showed: 1) tTG Ab, IgA (4.9), 2) Gliadin Peptide Ab, IgG (72.5) and 3) Gliadin Peptide Ab, IgA 2.3. Given my reduced gluten consumption and a possible IgA deficiency, my general practitioner referred me to a gastroenterologist for an endoscopy and next steps for possible celiac diagnosis.

After meeting with the gastroenterologist on the 10th of this month, I scheduled my endoscopy -- it's currently scheduled for the 30th. However, because I have had a lot going on professionally, and because of the brain fog, fatigue and anxiety, I have held off increasing my gluten consumption in preparation for my endoscopy. My doctor said that was okay, as long as I had the equivalent of a slice of bread each day for the week leading up to the biopsy. Given that schedule, I should begin my gluten regimen starting tomorrow and carry it out until next Monday.

Here is my "problem": Happily, I have a job interview scheduled for this Thursday, but if I begin my gluten regimen as planned, I will be a train wreck come Thursday and will not feel like myself for the interview. So, I feel like I have two options: first, reschedule the endoscopy, delaying it by one week; or, second, keep the current appointment, wait until after the interview to eat any gluten, and then try to compensate by eating even more gluten Friday, Saturday and Sunday.

The drawbacks of the former are that I may have less gluten in my system by then, and I may worry that I've skewed the results. With the latter option, too, it's unclear if I would be eating enough gluten to ensure accurate results.

I need to decide very soon what I'll do, and I would really appreciate any guidance anyone may have. I am extremely stressed out by the idea that my gluten uncertainty could undermine my professional confidence, and I'm frustrated and exhausted by the uncertainty of the diagnosis process.

Many thanks,

Basilicious

[rosetapper23]

I would advise you to reschedule the biopsy...or just cancel it altogether. Although an endoscopy was once considered the gold standard, the leading expert in the field of celiac now believes that that is no longer the case. (BTW, your gastro probably hasn't yet received that memo.) If you truly feel that gluten is an issue for you, simply eliminate it completely for the rest of your life. If you feel you really do need an official diagnosis, then reschedule the biopsy so that you're prepared for it. By no means should you jeopardize your job interview.

[basilicious]

Thanks very much, rosetapper23. Reading about everyone's frustrations regarding the biopsy makes me incredibly conflicted about it. Given the possible inconclusiveness, along with the invasiveness, risks, inconvenience and expense, it is difficult to feel that great about it. However, I do feel like I need a definitive diagnosis, especially given that only my IgG levels were raised. (But they were triple the reference range.) Do you have any idea what else could cause such a high elevation in IgG levels if not celiac? Are there other auto-immune diseases associated with gluten?

Anyway, after a lot of consideration and research, I decided to take your advice and delay the biopsy by a week and a half. Also, I'm not going to do the full-on gluten challenge. I'm going to have a small amount of gluten each day, but I don't want to take the risks associated with consuming so much of it over such a concentrated period of time. If in fact I have celiac, I don't think I've been sufficiently gluten free to heal by now. Once I get the results, I will only treat a positive diagnosis as conclusive; if it's negative, I'll most likely do the DNA test and the stool test. Trying to take it one step at a time...

Thanks again. It's for the best that we can't put our lives on hold while seeking a diagnosis, but having things happen all at once can be overwhelming.

[rosetapper23]

I'm wondering if you've done some research about what a high IgG actually means in terms of celiac. The testing can be really confusing. The information at the following link has excellent information about celiac tests, and it suggests that solely having a high IgG indicates that you may not actually have celiac. Perhaps you are gluten intolerant?

Open Original Shared Link

Also, what happens if you get the job that you're interviewing for? How will you feel when you challenge yourself with gluten (even if it's only a small amount) when you've only just begun working for a new employer? Will you be able to impress your employers during your first two weeks if you're feeling ill? I can understand, though, that you would want to know the official diagnosis. An alternative, though, might be to go strictly gluten free for six months and then purposely have some gluten. A person with celiac or true gluten intolerance will become VERY ill. In such a case, you'd have your answer: your official diagnosis is that gluten is not good for you.

Good luck with the interview!

[basilicious]

I'm wondering if you've done some research about what a high IgG actually means in terms of celiac. The testing can be really confusing. The information at the following link has excellent information about celiac tests, and it suggests that solely having a high IgG indicates that you may not actually have celiac. Perhaps you are gluten intolerant?

Open Original Shared Link

Also, what happens if you get the job that you're interviewing for? How will you feel when you challenge yourself with gluten (even if it's only a small amount) when you've only just begun working for a new employer? Will you be able to impress your employers during your first two weeks if you're feeling ill? I can understand, though, that you would want to know the official diagnosis. An alternative, though, might be to go strictly gluten free for six months and then purposely have some gluten. A person with celiac or true gluten intolerance will become VERY ill. In such a case, you'd have your answer: your official diagnosis is that gluten is not good for you.

Good luck with the interview!

Thanks very much for the link to that information. This part was particularly helpful, so I'm copying it here for others:

"If a patient

[ravenwoodglass]

Did your doctor do a total IGA? If not then they should as low IGA would explain why those testes were negative but the IGG was high. The DGP for IGA and IGG would also be a good idea as those are the newest tests and most specific for celiac.

[basilicious]

Hi ravenwoodglass,

Thanks for your help. I don't know if did do the total IgA. During our consultation, my doctor said that she would, but it's unclear from my results below whether they actually reflect a total IgA measurement.

tTG Ab, IgA: 4.9

Gliadin Peptide Ab, IgG: 72.5

Gliadin Peptide Ab, IgA: 2.3

What do you make of them? I was still eating incidental gluten when they did the test, but I had scaled back for about a month and a half.

[ravenwoodglass]

Hi ravenwoodglass,

Thanks for your help. I don't know if did do the total IgA. During our consultation, my doctor said that she would, but it's unclear from my results below whether they actually reflect a total IgA measurement.

tTG Ab, IgA: 4.9

Gliadin Peptide Ab, IgG: 72.5

Gliadin Peptide Ab, IgA: 2.3

What do you make of them? I was still eating incidental gluten when they did the test, but I had scaled back for about a month and a half.

Yea the total IGA is not there. You may want to ask to have it done. If someone is IGA deficient then doctors go off of the IgG and yours was positive even being gluten light. Would have to wonder how high it was when you were eating a full gluten diet.

[basilicious]

Yea the total IGA is not there. You may want to ask to have it done. If someone is IGA deficient then doctors go off of the IgG and yours was positive even being gluten light. Would have to wonder how high it was when you were eating a full gluten diet.

I really appreciate it, ravenwoodglass. I will call my doctor today, and this is something I can schedule before my biopsy. Assuming my total IgA is normal, do you think my existing low IgA results would be due to the low gluten intake? Do you have any idea how long it takes for IgA levels to fall after gluten consumption falls?

I'd also be very interested in hearing your thoughts on my current plan of action...since I'd like a definitive answer, I'm leaning toward the biopsy, but I'm not going to go full-force with eating the recommended amount of gluten. If the biopsy is negative, I'll do the stool test and the gene test. The stool test should still be positive despite my dietary changes, right?

Do you have any thoughts on what else could drive the non-celiac leaky gut described in the article rosetapper shared? I had previously researched leaky gut syndrome, and since it's not recognized by Western medicine (no surprise there), there is less information about it. It sounds like I would just supplement appropriately, drink very little alcohol, probably be gluten-free and stay on probiotics...

As you can see, I have lots of questions...thanks again for all your help.

[ravenwoodglass]

I really appreciate it, ravenwoodglass. I will call my doctor today, and this is something I can schedule before my biopsy. Assuming my total IgA is normal, do you think my existing low IgA results would be due to the low gluten intake? Do you have any idea how long it takes for IgA levels to fall after gluten consumption falls?

I'd also be very interested in hearing your thoughts on my current plan of action...since I'd like a definitive answer, I'm leaning toward the biopsy, but I'm not going to go full-force with eating the recommended amount of gluten. If the biopsy is negative, I'll do the stool test and the gene test. The stool test should still be positive despite my dietary changes, right?

Do you have any thoughts on what else could drive the non-celiac leaky gut described in the article rosetapper shared? I had previously researched leaky gut syndrome, and since it's not recognized by Western medicine (no surprise there), there is less information about it. It sounds like I would just supplement appropriately, drink very little alcohol, probably be gluten-free and stay on probiotics...

As you can see, I have lots of questions...thanks again for all your help.

Yes low gluten intake can skew the results of blood tests and endo. The gene tests can not say for sure one way or the other is someone has celiac as many have the genes and never develop celiac and then there are diagnosed celiacs that do not have the most common genes.

You might still show positive on the stool tests but most doctors do not accept those results.

In the long run how your body reacts to being strictly gluten free is the most conclusive test as to whether you need to be gluten-free or not, IMHO.

[ciamarie]

Ref. potential non-celiac leaky gut, I know from my recent studies that it has to do with something called zonulin. I just did a search for zonulin gliadin protein and there were a few articles that might be interesting and also might be highly technical. Then I also found this one here on celiac.com that breaks it down pretty well, imo. (no pun intended!):

[rosetapper23]

Yes, zonulin is the key! Dr. Fasano has been speaking of this for many years...and it is, unfortunately, highly technical.

As for other autoimmune diseases that can mimic celiac, there's lupus, Sjogren's, and a bacteria-caused disease called Whipple's Disease.

[basilicious]

Wow, thank you so much ciamarie and rosetapper23! It looks like I have a lot more research to do. I will read the article associated with the link you posted, ciamarie, and it sounds like a great paper to forward to my endo (at least it will test whether she is aware of zonulin).

What's interesting to me is that right before I got sick, my husband and I had a malfunction in our water filter. Basically it got damaged and for about two weeks it experienced a buildup without our realizing it. I've since wondered if that could have caused any heavy metal toxin (or bacteria) buildup, but since I made the gluten connection, I dismissed that idea. Having skimmed through the link you provided, it looks like that could have been a trigger in all this...

Also, clearly I still need to thoroughly read the materials you linked to, but I saw the mention of zinc and can't help but think back to another odd occurrence recently; I've been taking sublingual B12, Omega-3, Omega-6 (GLA), Vitamin D and Zinc, but I forgot to take the Zinc a few days in a row. When I remembered to take it again, I took two instead of one (to make up for lost doses)...but within about thirty minutes I was extremely nauseated to the point that I had to lie down. Nothing else in my regimen was different that day (I had food in my stomach), and I have kept thinking that there was more to that situation than I could know.

It seems like there are other issues that should be diagnosed as part of the biopsy evaluation; do you know if endos will automatically test for a range of GI illnesses, or do you think I need to request that my doctor have the lab review for several issues? I'm not interested in repeating this procedure!

[basilicious]

One question on the topic of zonulin: it seems like I could have a blood test to check my levels, and if it's celiac, it seems like my levels would be conspicuously high. If it isn't celiac, my levels would be much, much lower even if slightly elevated. Do you know if anyone is using this type of testing to infer celiac? If my endo comes back negative, then I think my plan will be to:

1- test total iGa to determine if I have a deficiency

2- ask for a zonulin levels check

3- get the genetic test and

4- do the enterolab stool test.

Between all of them, I feel like I could reach a definitive conclusion as to whether this is celiac or gluten sensitivity.

Any thoughts on this plan?

[basilicious]

Just wanted to share that my interview was rescheduled for the 6th, so I reverted back to my original endo date of this coming Monday. Lots of stress with the back and forth, but I'll be happy to get it over with.

Having gone heavier on gluten the last few days, I am already feeling such a difference. I have had bloating, tingling in both of my ring and pinky fingers, dizziness, a headache and jumpy/shaky vision and hands; I feel like I'm on an OTC cold medicine or am suffering from wildly low blood sugar...just very dazed and fatigued. Had such a hard time getting out of bed this morning. Also, my face is now noticeably puffy and getting red.

My mood is low and I feel anxious and a little obsessive compulsive; it's so surreal being able to step back and finally understand why I haven't felt like myself. I am scared about Monday, but I'm going to follow the doctor's orders and eat the equivalent of one slice of bread per day until then. The pathologists specialize in GI issues, so she said that they are good at detecting even early signs of celiac damage (I'm really hoping this is a saving grace since I've been gluten light for several months). I shared my concerns about eating a lot of gluten in advance of this. The doctor also said she'll take 6-9 samples and from all over, though she did say that she'll focus on the duodenum. Based on reading about the many causes of false negatives, I am comforted that the endo itself ought to be thorough...it's just a matter of whether my gluten light diet has undermined the results.

[ciamarie]

Have some tortellini for me! Or pizza. Or both!? Hang in there, and keep us posted.

[basilicious]

Thanks, ciamarie. I really should be taking better advantage of this. Pizza and tiramisu need to be added to this weekend's menu...

[basilicious]

Well I had my endoscopy and am waiting for the results. However, I really could use someone's advice about getting over all the mental fog caused by the anesthesia.

I had the procedure Monday morning, then rested a lot the rest of Monday and Tuesday morning. By Tuesday afternoon, two things had happened: I was feeling more energetic, but I had also developed a cold. I did some moderate exercise yesterday afternoon - a DVD I know well and that is only 30 minutes - because I thought exercise would help flush out the anesthesia and perhaps help head off the cold.

However, today I went back to work and feel mentally so out of it - extremely spacey, my eyes are having difficulty with focusing properly, and my neck just feels funny - a weak, vulnerable feeling that is very difficult to articulate.

A lot of my gluten symptoms are neurological, but I haven't had them evaluated; now I'm afraid that the anesthesia has exacerbated my existing neurological issues. Does anyone have any input on how long it took them to feel back to normal mentally after the anesthesia? Or, any feedback on how the anesthesia may impact existing neurological symptoms?

Since the procedure, I started doing some detox smoothies/raw salads/liquid acidophilus; could this be my system flushing out a bunch of toxins? Thank you so much for any insight/advice you may have!

[ravenwoodglass]

You should be well over the anesthesia's effects by now. Could it be the aftereffects of your gluten challenge? That may take a while to resolve.

[basilicious]

You should be well over the anesthesia's effects by now. Could it be the aftereffects of your gluten challenge? That may take a while to resolve.

Thanks, ravenwoodglass. I do think it has to do with the gluten challenge. I went to the doctor just now because I was so concerned about the sudden weakness and neurological symptoms. She told me that I definitely have an acute virus, and it's a matter of waiting for the endo results and then taking it step by step. She also said I have a mild upper respiratory infection and to take some ibuprofen and drink plenty of fluids. She said that after the endo results are in, one of the next steps would be to go to a neurologist. If this is gluten-related neuropathy, how temporary or permanent is it?

If I don't have celiac, will that impact how they view my neurological symptoms? I have seen some discussion about neuropathy in this forum, and it seems highly individual.

[ravenwoodglass]

Thanks, ravenwoodglass. I do think it has to do with the gluten challenge. I went to the doctor just now because I was so concerned about the sudden weakness and neurological symptoms. She told me that I definitely have an acute virus, and it's a matter of waiting for the endo results and then taking it step by step. She also said I have a mild upper respiratory infection and to take some ibuprofen and drink plenty of fluids. She said that after the endo results are in, one of the next steps would be to go to a neurologist. If this is gluten-related neuropathy, how temporary or permanent is it?

If I don't have celiac, will that impact how they view my neurological symptoms? I have seen some discussion about neuropathy in this forum, and it seems highly individual.

I had severe neuro impact. It did take some time to heal but most of my problems did go away with time and being strict with the diet. Some heal more completely than others but many do get a great deal of relief, if not total resolution, from neuro issues.

Now that you have had the endo do go strictly gluten free and give it a bit of time. You don't have to wait on the results and some get a great deal of relief even before they go back for the results. Keep in mind that false negative endos are not uncommon.

Unfortunately it is not unusual for doctors, including neurologists to be clueless about the ways celiac can impact the brain. It wasn't until I had been gluten free and saw my MS type symptoms resolve that I started to do some research and discovered that the UBO lesions in my brain were diagnostic of celiac. My neuro was clueless and told me they meant nothing.

Some of us with nerve impact do benefit from sublingual B12. It does seem to help the healing process.

[basilicious]

Thank you, Ravenwoodglass! You have been so helpful, and I really appreciate all the great information (and comfort) the members of this forum offer.

I have been on sublingual B compex with B12, but I may increase the dosage as I recuperate. I am not going anywhere near gluten -- am well on my way to implementing a strict gluten-free diet now that the test is over -- and it is great to hear that many of the neuro symptoms resolve for others. I noticed an almost immediate improvement once I went from a full-gluten to gluten-light diet, so I suppose it's no surprise that the gluten challenge quickly caused a recurrence of strong neuro symptoms in me. I am going to stick with the supplements, acidophilus and some moderate exercise (after I get through this dizzy/weak spell) to try to get back to equilibrium. Just trying to stay positive...!