• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Very Frustrated
0

39 posts in this topic

Last May, I was diagnosed with Celiac disease. Since then, I've been on a strict gluten-free diet. I have seen many doctors, about 5 of who confirm that I definitely have celiac disease. The problem is, I just got my antibodies retested last month and I'm still very elevated and sick. Now I have atypical celiac disease, the kind without GI symptoms (except for acid reflux which has improved a lot). I mainly just feel really fatigued and have a lot of sleep problems, as well as a string of other symptoms. I also don't get any instant reaction if I'm glutened. Which is good in some ways and bad in others. Instead, I seem to have a very delayed reaction and I'm still not sure what exactly the reaction is. I've been feeling tired a lot more lately and have lost weight again, so I went to the University of Chicago Celiac Center and got retested. Sure enough, the results were not good:

TgG IgA 44 (20 or less is normal)

glaiden gluten protein 79 (20 or less is normal)

IgG Normal (but this has always been normal)

Since this is the first time I got tested at this facility, they cannot compare my latest results with the past 2 tests which I got done different places with different scales.

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive. Without getting a reaction each time I accidentally ingest gluten, I have no idea whether I'm continuing to poison myself. I'm frustrated and discouraged.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Last May, I was diagnosed with Celiac disease. Since then, I've been on a strict gluten-free diet. I have seen many doctors, about 5 of who confirm that I definitely have celiac disease. The problem is, I just got my antibodies retested last month and I'm still very elevated and sick. Now I have atypical celiac disease, the kind without GI symptoms (except for acid reflux which has improved a lot). I mainly just feel really fatigued and have a lot of sleep problems, as well as a string of other symptoms. I also don't get any instant reaction if I'm glutened. Which is good in some ways and bad in others. Instead, I seem to have a very delayed reaction and I'm still not sure what exactly the reaction is. I've been feeling tired a lot more lately and have lost weight again, so I went to the University of Chicago Celiac Center and got retested. Sure enough, the results were not good:

TgG IgA 44 (20 or less is normal)

glaiden gluten protein 79 (20 or less is normal)

IgG Normal (but this has always been normal)

Since this is the first time I got tested at this facility, they cannot compare my latest results with the past 2 tests which I got done different places with different scales.

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive. Without getting a reaction each time I accidentally ingest gluten, I have no idea whether I'm continuing to poison myself. I'm frustrated and discouraged.

If you are super sensitive avoiding gluten free mixes and pre-made gluten free products entirely may be your best option .Even though "gluten free" those product can have a low measure of gluten. :huh: Sticking with just whole food for awhile may help.

Hope you find the culprit soon.

0

Share this post


Link to post
Share on other sites

I agree with the previous poster. It would be a good idea to eat only produce and meat for awhile and see if that helps. Not eating "gluten-free" items made in shared facilities might not be enough. They might mot be getting clean enough starting materials. There is a lot of potential for cc at the farming, harvesting, and shipping levels.

You may be a super sensitive celiac. I think that even some pesticides might give me a reaction. I need to wash and peel carefully and be careful about how my unpeelable items are treated.

I wouldn't go thinking that you have refractory celiac until you try a lot more dietary restrictions.

0

Share this post


Link to post
Share on other sites

Have you gone through and checked all your hygiene products? I was glutened by lipgloss, and a cookie crumb kiss.

Don't ask me how I was feeling weak and tired for a while, rechecked everything and found barley in the deodorant. I assure you I don't eat deodorant nor lick armpits, but was still affected.

Wheat free doesn't mean gluten free. Health food stores put spelt in the "wheat free" area. As you know, spelt has gluten.

Keep a food journal. If you are having other sensitivities/intolerances/allergies you can track them down quicker.

1

Share this post


Link to post
Share on other sites

I never cheat and have tried very hard at this diet. But I'm beginning to think that I must be continuing to ingest gluten from somewhere. I'm looking into all my medications and have been advised not to eat out at all or eat anyone else's cooking, even if it's gluten-free. I also have been advised to avoid so called gluten-free products that state that they were made in the same facility as wheat.

The doctors highly doubt that I have lactose problems because I do not have GI problems. I'm beginning to wonder if I have non responsive or refractory celiac disease. Or if I'm just extremely sensitive.

So sorry you are feeling so sick and disheartened! A lot of us here can sympathize, i think - it's so, so upsetting when you are gluten free and that's just not cutting it. Hopefully some folks here could help you out. :)

Could you give a list of a couple typical days' worth of food? Maybe there's something some of us might have heard of as an issue. Where do you work? Does it involve anything with food prep or construction? Both of those areas have a lot of airborne gluten that can really mess a celiac up. What products do you use for your body, spouse and kids' bodies, pets?

I don't get gut symptoms from gluten, either - didn't get any at all, really, except for periodic constipation. Turns out that I have celic disease, intolerances, AND food allergies. Once I eliminated them all, now I have gut problems with dairy and such. Weird, because when I was eating it all the time, it was like everything was so screwed up anyway, I never noticed any trouble. So at least I'm one example of someone with dairy issues who didn't have gut problems at first.

From my experience:

- mild food allergies may not give you hives, or show up on allergy tests accurately (this according to my allergist, mind you), but they can cause inflammation in the gut, other bodily issues, and impede healing significantly.

- food journals are a big key to better healthy when you are struggling to find out what's getting you. It's the only way I found some of my problems. And it can help a lot when you have delayed symptoms, because that can still be a pattern, if you are seeing it, say, every time you eat a certain brand of rice or something.

- Do you eat gluten-free oats? About 10-15% of celiacs have ASE - avenin sensitive enteropathy. This means, basically, that we can't have oats at all, even gluten-free ones, or we react pretty much like we do to wheat. Not only is this an issue for oats themselves, but many gluten-free facilities do not have any practices in place to prevent cross-contamination from gluten-free oats, so you can get sick from them. Bob's red mill is one that many oat sensitive celiacs don't do well with because gluten-free oats are processed in the facility, and Lundberg rice grows oats as a cover crop and can be a problem as well. Many gluten-free products can be an issue for this reason.

- If you are really sensitive, you might not heal on a normal, very strict gluten-free diet. I have super sensitivity, too, and I've had to call up companies and really grill them to hunt for safe food. As an example? There are gluten-free facilities that do not test the food coming out of the facility for gluten, and there are some that do. There are gluten-free companies that test their food down to 20ppm of gluten, some that test to 10ppm, and some that test to 5ppm. So we could eat 4 slices of bread from one gluten-free company and get as much gluten as 1 slice of bread from another, even though both are made in a gluten-free facility. It might not matter much to someone who is not as sensitive, but for one who is, this can make a HUGE difference.

- Are you in a shared household or a gluten free household?

- When checking your meds and vitamins, you'll want to ask two questions: are they gluten free AND do they test for gluten. It's surprising how many answer yes to the first, but no to the second. I guess they simply know the gluten levels through a vulcan mind meld or something, sigh. <_<

- if you are REALLY sensitive, there are going to be some extreme measures you have to take to stay safe. There's a few of us who are in that boat here in the group, so if you hit the point that you want to try, we'd all be happy to help, I imagine. But probably better to not go that extreme if you don't have to, eh?

Oh! And one last thing. I don't know if this is something you would want to do, but this is what helped me - I fasted for a couple days. Not on purpose - I thought I had the stomach flu or something and didn't want to eat. But with no food, I started feeling SO much better. And on trying new foods, the reaction was much more noticeable, so I was able to suss out bad foods quicker, I think, than if I'd just slowly been eliminating foods one by one to check on them. I found foods I had allergies to that were later confirmed with blood work, plus a few that were bad that we had no idea about. It took a while to get to a safe diet, but while hungry, I was still feeling better than I had been! :-)

Good luck to you.

Shauna

1

Share this post


Link to post
Share on other sites
Ads by Google:


thanks so much, everyone, for your support and suggestions. I will be back again soon.

1

Share this post


Link to post
Share on other sites

You should look into taking digestive enzymes to break down the gluten that is already in your gut. And also I use Triphala and it works wonders at cleansing the gut.

Also - your tiredness might be coming from a thyroid condition because folks with gluten sensitivity often have a weakened thyroid because this is an autoimmune disorder.

0

Share this post


Link to post
Share on other sites

You should look into taking digestive enzymes to break down the gluten that is already in your gut. And also I use Triphala and it works wonders at cleansing the gut.

Also - your tiredness might be coming from a thyroid condition because folks with gluten sensitivity often have a weakened thyroid because this is an autoimmune disorder.

I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.

1

Share this post


Link to post
Share on other sites

I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.

and reeks havic in its wake B)

0

Share this post


Link to post
Share on other sites

I've had problems with supplements. I think that a lot have very low level cc. I'm sensitive to such low levels that for me they do more harm than good.

0

Share this post


Link to post
Share on other sites

I don't think gluten just stays in your " gut" and can be broken down. If you are gluten free or even if you get some accidentally, it doesn't stay, it moves thru.

Actually gluten does stay in your ""gut"". I would link to pages but this site seems to be suspicious of linking. Just do a simple search.

It sticks to the walls of your intestines and also fills in pockets of the villi -- it can last there for a very long time, and rots as it sits there, causing more illness.

Cleansing your gut is imperative.

0

Share this post


Link to post
Share on other sites

Thanks for all of your support. I am just feeling so frustrated right now...I've been checking every medication that I'm taking to see if it's gluten free. So far, all of them are except for 2 which the pharmacist has been trying to find out now for the last few weeks (some of these companies are so bloody uncooperative). I take Citrical Calcium Citrate which is gluten-free. I have discontinued taking any other supplements as I don't trust them. I've also cleaned out my kitchen of all "questionable" items (for instance, items that say they are gluten-free but then say they were manufactured in the same factory as gluten or items that don't say anything about being gluten free). I make sure to use gluten-free toothpaste, lipstick, deoderant, etc. I have gotten my thyroid checked many times but so far it's been normal.

I am just feeling so tired and low on energy. That's my main problem, but I also am having some headaches and sinus/pressure, sleep problems and back pain. I don't know what more I can be doing right now...but there might be things that aren't obvious to me. For instance, I eat at my parent's house a lot. They have pretty much made their kitchen gluten-free, but they have an old wooden knife rack where they have been storing knives for at least 30 years. It just occurred to us that the wood is probably soaked with gluten (when we ate normal bread before I was diagnosed). I also wonder if it lingers in any other pots and pans. I know that wood is bad and so is teflon.

0

Share this post


Link to post
Share on other sites

Hi. I was diagnosed 10 years ago. I found I also have other conditions that cause the same symptoms. Here is a site that might give you some extra info: http://aboutmecfs.org.violet.arvixe.com/Trt/TrtGSHIntro.aspx Hope it comes through.

There are so many systems in the body and when one is off balance, then others can become off balance, too.

You are on the right track. It has taken me so much experimentation to find a healthy diet and to regain my health.

0

Share this post


Link to post
Share on other sites

I have gotten my thyroid checked many times but so far it's been normal.

Have you gotten a copy of your records to see what the numbers were? The guidelines for what is considered hypothyroid changed in 2002, however many drs are still not aware of the changes. See here: http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

I have also read that some people can get diagnosed with hypothyroid if their tests consistly show a change toward hypo but may still be just under the level considered normal. So get ALL of the test records if you can from every time you had it done so you can see if there is a trend you can point out to your dr. That and your symptoms may be enough to get them to prescribe a low level of TSH hormone.

Also, which thyroid tests they doing? If they are only testing TSH (which is the most common one they run), they may miss something. Make sure they do a full panel testing T3 and T4. This article: http://thyroid.about.com/cs/hashimotos/a/tedfriedman.htm explains a little more (although note the ranges are outdated) about why you could have a normal TSH but still have hashimoto's or a case of hypothyroidism.

1

Share this post


Link to post
Share on other sites

I know this is a pretty basic question, sorry if it has been asked and answered already, but have you had a full nutrient panel done lately? Your symptoms sound like someone whose nutrient levels could be out of whack

0

Share this post


Link to post
Share on other sites

My son kept getting glutened and I had an awful time going gluten-free until we

  • deep cleaned our kitchen
  • replaced or reseasoned old pots and pans
  • got rid of old appliances/mixers/etc
  • got rid of wood and plastic that we had before being gluten-free
  • stopped eating anything we didn't prepare in our own kitchen
  • Started the GAPS Diet

I've posted our story on my website, which you can find from my profile, and have some blog posts about GAPS there, too that you can find through the tag cloud or search. The GAPS diet is similar to what others here have suggested. It relies entirely on organic, free-range, pastured, minimally processed foods. It also eliminates all grains, introduces home fermented foods, and dramatically reduces sugar intake and sources. The diet aims at restoring the flora in your gut to a healthy balance, and to heal the damage done in the past.

0

Share this post


Link to post
Share on other sites

thanks for all of your suggestions. Can you tell me what a "full nutrient panel" is? I was checked for a whole bunch of food allergies from an alternative clinic. And it showed that I had lots of food allergies. However, the lab that processes those results has an "F" rating on the internet by many professionals. Also, that clinic was very questionable. They kept trying to sell me all kinds of supplements without telling me what was in them. And they did some other really bizarre tests, so I am not buying into those results as being accurate.

0

Share this post


Link to post
Share on other sites

I am talking about testing for various vitamins and minerals that celiacs are often deficient in - Vitamins A, E, D, K, B12, folate, magnesium, zinc, calcium, etc., also ferritin/iron. You also should have your thryoid tested if it has not already been done, and if your D is low you should have a bone density scan for osteoporosis.

0

Share this post


Link to post
Share on other sites

I was checked for a whole bunch of food allergies from an alternative clinic. And it showed that I had lots of food allergies. However, the lab that processes those results has an "F" rating on the internet by many professionals. Also, that clinic was very questionable. They kept trying to sell me all kinds of supplements without telling me what was in them. And they did some other really bizarre tests, so I am not buying into those results as being accurate.

I totally think you did the right thing there. I have reacted to supplements. I believe they commonly have low level cc and do more harm than good for super sensitives.

How do you find lab ratings?

0

Share this post


Link to post
Share on other sites

I'm really wary of anyone hawking supplements. Studies have shown that many of the supplements on the market don't even contain what they say they contain, because the labeling laws are not as strict or as enforced as on plain old food.

We have started supplementing three things, with good effects:

Fermented Cod Liver Oil (the fermentation is important) from Green Pastures

ConcenTrace Trace Mineral Drops from liquimins/TraceMinerals Research

GUTpro organic probiotic supplement powder - gluten-free, dairy-free, soy-free, maltodextrin-free, the filler is cellulose(we don't give it to the kids, starting with too much made us feel sick) We also eat lots of home-fermented foods.

0

Share this post


Link to post
Share on other sites

Have you gotten a copy of your records to see what the numbers were? The guidelines for what is considered hypothyroid changed in 2002, however many drs are still not aware of the changes. See here: http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

I have also read that some people can get diagnosed with hypothyroid if their tests consistly show a change toward hypo but may still be just under the level considered normal. So get ALL of the test records if you can from every time you had it done so you can see if there is a trend you can point out to your dr. That and your symptoms may be enough to get them to prescribe a low level of TSH hormone.

Also, which thyroid tests they doing? If they are only testing TSH (which is the most common one they run), they may miss something. Make sure they do a full panel testing T3 and T4. This article: http://thyroid.about.com/cs/hashimotos/a/tedfriedman.htm explains a little more (although note the ranges are outdated) about why you could have a normal TSH but still have hashimoto's or a case of hypothyroidism.

You have gotten a lot of good ideas here. To test thyroid, you need Free T3 and Free T4. Those numbers are what is actually available to you to use.

When I was first diagnosed I was very malnourished. My nails had ridges, my skin was not smooth all the time and my hair was brittle. I took good quality supplements and I simply couldn't absorb them. All the literature said "just quit eating gluten and you'll be fine", but that wasn't enough for me. I had a stool analysis done and the bacteria and fungi counts were way off, which is typical of people like us. I tried some drugs to balance it and that didn't work. Eventually I hit on a program that worked: I took acidophilus at night (TheraLac is my favorite, and there are other good brands) and Xango juice 3 times a day. The juice has mangosteen peel in it which is anti-bacterial and anti-fungal. It is also anti-inflammatory, which I think was one of the key things I needed.

Someone else mentioned fasting. I did the same. I used the juice along with organic apple juice and organic vegetable juice, rotated them one each hour. Within 3 days my gut starts feeling good again. If I stay on it for a week, it seems to be even better. About day 4 I add a hard boiled egg (if not allergic to eggs) if I start to get hungry. The system I was trained in is from Germany. It keeps your blood sugar levels normal, keeps you from going into ketosis, and is pretty alkalizing. Part of system is to chew everything for 50 bites. Can you imagine? It retrains our chewing so food is digested much better. When I come off the diet I only add one food at a time. It is soooo clear what I react to then.

Another thing I found over those years is that I had retro viruses. There are reliable tests for them now. Any one of the viruses can make you tired. I had 3 of them back when. I didn't tolerate the meds, so took anti-viral herbs. It worked. It enabled my immune system to fight whatever was there. I got a fever for a few days and in about 4 days I felt better.

When our gut is so far off balance we are susceptible to lots of things. Fortunately, there are good tests available now. You usually have to go to a holistic MD or ND to get the tests.

Hope you figure this out soon and get your energy back.

0

Share this post


Link to post
Share on other sites

I have gotten checked for thyroid problems many times, but am not sure which tests.

I have also gotten checked for various vitamins and minerals awhile back. It turned out that I was very low in Vitamin A and Zinc. I took those for awhile and got retested. The tests showed that I had gotten back to normal levels and my doc told me to stop taking those. I've also suffered off and on from anemia in the past but the last test I had showed that my iron level is good. Now that was a few months ago, so things might have changed.

In addition to having little energy, my acne has gotten worse. I also am experiencing pretty frequent lower back pain as well as brain fog.

Yes, that clinic that was trying to sell me all these suppliments has a bad reputation around here. They also wouldn't share my test results unless I came in for another extremely expensive appointment and another whole set of most certainly bogus tests. I managed to get my test results from through the University of Chicago Celiac Center (that alternative clinic has to give them those results by law). So that's how I found out about my various "allergies." I also found out that I had "candida overgrowth." Thoughts on candida overgrowth? Before I was diagnosed with celiac disease, I suffered from chronic yeast infections, some lasting months and not responding to any medications. I heard the whole "candida overgrowth" theory is very controversial.

0

Share this post


Link to post
Share on other sites

I have also gotten checked for various vitamins and minerals awhile back. It turned out that I was very low in Vitamin A and Zinc. I took those for awhile and got retested. The tests showed that I had gotten back to normal levels and my doc told me to stop taking those. I've also suffered off and on from anemia in the past but the last test I had showed that my iron level is good. Now that was a few months ago, so things might have changed.,,,,,

I also found out that I had "candida overgrowth." Thoughts on candida overgrowth? Before I was diagnosed with celiac disease, I suffered from chronic yeast infections, some lasting months and not responding to any medications. I heard the whole "candida overgrowth" theory is very controversial.

Just because, with supplementation, you got your levels back to normal, does not mean that your body is able to keep them at normal. I still supplement with B12 injections, and prescription D, and take MaxiMins and lots of other stuff because even though I have been gluten free for 3-1/2 years my body is still not able to make enough. I think a retest might be in order.

As for candida, I had it in the gut and it was absolutely no fun. (Don't know if you are talking about vaginal or otherwise. ) Could not digest anything. Of course, I had c. diff at the same time, but candida in the gut can be measured by a stool sample. Any naturopath can get that done for you, or maybe you have a sufficiently enlightened doc who can order a stool testing for you. That is the most reliable way of testing. It certainly sounds like you need to do SOMETHING. At this point if you are sure you are gluten free I would probably recommend a naturopath.

Looking back over your posts, it would seem that if you are being cc'd it is most likely coming from your parents' house, so check that one more time, especially with your mom.

0

Share this post


Link to post
Share on other sites

When I mentioned yeast infections, I meant the female kind. I've had them on and off since I was 13. Real drag. Since going on the gluten-free diet, I haven't had one. Yet. Hoping those will be a thing of the past.

I have no idea whether I have candida in my gut or not. Like I said, I don't have any stomach or gi issues. the only exception is acid reflux (GERD), which has gotten much better since going on the gluten-free diet.

I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?

0

Share this post


Link to post
Share on other sites

When I mentioned yeast infections, I meant the female kind. I've had them on and off since I was 13. Real drag. Since going on the gluten-free diet, I haven't had one. Yet. Hoping those will be a thing of the past.

I have no idea whether I have candida in my gut or not. Like I said, I don't have any stomach or gi issues. the only exception is acid reflux (GERD), which has gotten much better since going on the gluten-free diet.

I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?

I, too, have had severe chronic and often debilitating lower back pain for 3 1/2 years. I thought much of it was due to a back injury (herniated discs and so on) but recently was diagnosed with fibromyalgia which can certainly be related to celiac disease. That is why my back pain does not heal. The specialist used this analogy. If my husband, for example, were to stub his toe it would smart for several minutes. If I were to do the same, it would cause pain for several weeks! Perhaps something worth looking into.

I do not have GI issues with gluten either, thankfully.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,467
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
  • Upcoming Events