Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Think I Did A Foolish Thing, And Now I'm Having Trouble


jcp

Recommended Posts

jcp Newbie

Hi, everyone. I'm Julie and I'm hoping I can get some guidance.

I have had extremely bad IBS for about 7 years. I went from having some problems eating onions to having huge problems with essentially everything that wasn't meat, dairy, or simple carbohydrates.

I kept cutting things out of my diet, more and more all the time, and kept having trouble, but it would be better sometimes and worse sometimes.

Last year, I started going to a new doctor who asked if I'd ever been tested for celiac. I said no, I had a blood test, and it came back negative. Of course, I told her, it was going to be negative because I can eat those simple carbohydrates. It's veggies and fruits and fiber and all of that stuff that causes the trouble.

This year, it was worse than ever. She said, "Are you SURE you don't have celiac?" and I reminded her I'd been tested. She did other blood tests and I have a Vitamin D deficiency. She suggested I see a specialist, but honestly I just felt like I didn't have time. (I'm in law school.)

Still thinking she was crazy, I decided to show her! I'd try a gluten-free diet for a while and see, thinking that even if it helped, I would still be able to go back on gluten and then go forward with testing.

So, I went off gluten for about three months. The change was remarkable. Huge. The worst of the IBS symptoms basically went away in a few weeks. The rest faded over the months.

Still, I knew I had to go back on gluten at some point just to get definitive tests done. Blood work again, maybe a biopsy, seeing a specialist, etc.

So, I decided I'd try eating gluten again. I started on Thanksgiving. I had two meals on Thanksgiving that involved bread. By the end of the day, I just had a rather odd full feeling, like I'd been gorging all day, though I hadn't. Friday, more gluten. Really uncomfortable now, feeling like my stomach was stuffed full. Saturday, more gluten. Extreme pain by the end of the day. Couldn't take any more, stopped eating gluten, and am now back to feeling mostly normal on my fifth day back gluten free, though boy howdy were the days in between really incredibly rocky, with major digestive issues.

So, my questions:

1. If this is a gluten issue, why would I be suffering so much when before going gluten-free the symptoms were not so dramatic? Does this suggest it's more in my mind?

2. If this is a gluten issue, does this mean the weeks or months I'd have to stay on gluten to complete my testing would be THAT miserable?

I feel like an idiot for trying to go gluten-free without having a diagnosis, though I really thought it was not going to work. Now I feel a little trapped. Any help, advice, stories, or smacks upside the head would be welcome. Well, maybe not the smacks, but I probably deserve them!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ollie's Mom Apprentice

Hi there,

I hear ya. I used to think salad didn't agree with me because it would come out within 2 hours of eating it. I also thought I had a problem with alcohol. But nope, it was gluten the whole time.

If your "IBS" symptoms resolved while gluten-free, I don't think this is all in your head. Deep down you probably feel the same way.

As for continuing to consume gluten for testing purposes.... unfortunately, yes, if gluten is your issue then it won't get any better while you do the challenge. Keep in mind that the testing is looking for antibodies or blunted villi... basically this means you have to damage your body to the point doctors can see the damage in order to get a diagnosis.

I guess the real question is : do you think you need an official diagnosis?

You are an adult, so you can control your own diet. You will find there are many of us here who don't have an official diagnosis (me included). We know gluten is bad for us and don't need a diagnosis to make us stick with the diet.

Ask yourself if you really need that diagnosis.

Hth. And welcome!

Takala Enthusiast

For reasons unknown, those with real gluten problems, who quit ingesting gluten for a period of time, then resume, frequently feel the bad effects much worse than before they quit. This is called a "gluten challenge." It is also done with other foods, you stop eating it, then reintroduce it and see what happens. A normal person, say, someone like my spouse who eats gluten free at home for long periods of time, but sometimes eats gluten out at business travel, feels no ill effect whatsoever from switching back and forth. I would get very sick if I tried that. I used to be able to tolerate some minor gluten cross contamination, (although I tried to avoid it) but now, having been years off of it, I can't. I've been hammered by certain food products that others can eat, and I have to avoid them, and be careful. So, you see, this is not in your head, this is a very real phenomena and it is another way to confirm that you do have a problem with gluten.

Secondly, sometimes the testing is less than perfect. Even if we lived in a world where the testing was completely accurate, there is still a category of gluten intolerance called non- celiac gluten intolerance, or NCGI. These people really do have a physical reaction to eating gluten, but they won't be "officially" diagnosed as celiac. I don't have an "official" diagnosis, but it does not matter to me because I am rock-solid on my need to be gluten free, and I have had several battles with physicians trying to insist that I couldn't possibly be celiac, based on stereotypes, because at that time there was not the more widespread awareness we have today of the more unusual neurological symptoms.

I don't know what would happen if you went back on gluten full time, but.... sometimes people do give up and just go gluten free, so they can avoid the side effects. Your physician may give you her blessings to be called a "gluten intolerant" based on your "gluten challenge," especially if you then can bring up your vitamin D levels. (has anyone looked at your bone density, I had that at an early age, another hint that they missed.)

If you are not doing so already, it is a good idea to take a gluten free multivitamin supplement, being sure to get a B complex in there, and a gluten-free calcium, magnesium, and D supplement, as we need more of these than regular people.

1desperateladysaved Proficient

My MD made a diagnosis based on a genetic test, which you can do without eating gluten, and my observations when going gluten free. We have since verified some damage by a nutrient absorption test and food intolerance tests.

Diana

jcp Newbie

Thank you all for your good information and advice.

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.'

I was hoping someone would say that once I got over the first few days or week, I'd settle back into my previous level of discomfort. I know, pipe dreams. :D

shadowicewolf Proficient

My IBS vanished when i went gluten free and took the vomiting with it (it was really bad, every day).

I too had it for years (it progressively got worse from one to two times a month to the daily stuff), about... 9 years? I think? I remember when it first started. It got to the point where when i'd go out i'd have to map the places out and take peptobismol beforehand.

Oddly enough, for the times i was exposed to gluten after i went free, i went to the opposite extreme :blink: so weird.

tarnalberry Community Regular

I would like to point out that you have TWO very positive tests right here. You feel better without gluten. You feel worse with it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ollie's Mom Apprentice

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.

IBS isn't really a diagnosis of anything. It's like telling someone they have migraines or fibromyalgia. All it is is a label for a set of symptoms. There's never a cause identified with it, nor effective preventative treatments provided.

I have no official diagnosis, but I can't tell you how liberating it is to not have to know where every publically accessible washroom is at my destination, and the routes there and back, when I need to go somewhere. Also, not having the frequent .migraines, accompanied by vomiting so violent that I could do nothing more than lie on the bathroom floor for entire days, is also a freeing feeling.

You did conduct a scientific experiment (elimination diet). With reintroduction of gluten, you returned to feeling ill. That is a legitimate test.

If you decide to tough out the gluten challenge in order to have testing done, what will you do if the tests come back negative? False negatives are a real possibility. Or you may be non celiac gluten intolerant (NCGI), which means you test negative on blood and biopsy, but respond to the diet. Just because you may not get that label of "celiac", does that mean you'll continue eating gluten and making yourself ill?

ravenwoodglass Mentor

I have to agree that you were positive on the best, most reliable test we have. It is too bad your doctor didn't rerun your testing while you were still eating gluten. Especialy if you were tested a few years ago. Science has fairly recently developed some much better tests. You could also have been a low positive back then as some doctors will call a low positive negative.

Talk to your doctor. It sounds like the doc was pretty certain your symptoms were celiac. You may get your official diagnois based on your low vitamin levels, resolution of symptoms gluten free and your reaction to the gluten challenge.

You could also get gene tested. Be aware that even though the two genes most commonly associated with celiac are the ones most often found, there are others. The gene test can be helpful but it can not rule celiac out firmly just because DQ8 or DQ2 are not found

jcp Newbie

Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?

Ollie's Mom Apprentice

Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?

Deficient? In what possible way?

A proper gluten free diet, based on whole foods, not processed gluten-free crap, is probably one of the healthiest diets one can follow. Wheat products in and of themselves are naturally nutrient deficient, which is why they tend to be enriched/fortified.

There's no harm in adding a multi vitamin, per se, but it is no more necessary on a gluten-free diet that on a typical western diet (or, IMO less necessary on a gluten-free diet).

Did you read this on the web? If so, do you have the link?

The real trouble with trying a gluten-free diet prior to diagnosis, as you've discovered, is that testing requires eating gluten, which many people who have a gluten issue cannot handle as it makes them so ill.

jcp Newbie

I'm not sure what deficiencies. I read it Open Original Shared Link:

As Lara Field, pediatric dietitian specializing in celiac disease at the University of Chicago (Open Original Shared Link) points out, going gluten-free can also lead to certain nutritional deficiencies, so you should be certain of the diagnosis before committing you — and perhaps your entire family — to this diet.

I went to that website, but didn't see any deficiencies listed there.

GottaSki Mentor

When I was diagnosed I went to a nutritionist that explained how I would no longer be eating processed foods fortified with vitamins and minerals -- I ate very few of these for the 43 years before diagnosis - so it was a non-issue for me. Whole foods and supplementing any deficiencies caused by Celiac Disease will fulfill all dietary requirements far better than the SAD (standard american diet).

tarnalberry Community Regular

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.

Em314 Explorer

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.

Tangent, but would you happen to have a source for this, or a resource you could link me to with more info on what other nutrients most often get lost when one stops eating processed/fortified bread products? They have been a big part of my diet so that's probably something I ought to think about; I've been primarily focusing on protien and iron (fiber would be an issue but I eat plenty of whole fruits and veggies). (God only knows how much of it's actually been getting into my system correctly anyway if this really is celiac, though.)

jcp Newbie

I'm so glad I started this thread. Thank you all for clearing up some misconceptions I had and for talking sense. I'm not always the most sensible person!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,771
    • Most Online (within 30 mins)
      7,748

    Jwilson4681
    Newest Member
    Jwilson4681
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      By specificity, it's not so much that elevated dgp-igg can be caused by other diseases but that it can be a false positive or a transitory immune system reaction to gluten. I believe it can also point to NCGS or a transition from NCGS to celiac disease in some cases. Some experts feel that NCGS can be a precursor to celiac disease. If biopsies are negative for celiac disease and you decide to continue with normal gluten consumption, I would have regular antibody testing done to keep an eye on those DGP-IGG levels to see if they remain high and to see if some of the IGA levels start to creep up. Elevated dgp-igg levels seem to be related in some way to an unhealthy immune system reaction to gluten. https://healthmatters.io/understand-blood-test-results/anti-deamidated-gliadin-igg-dgp-igg By the way, migraines are a common symptom of celiac disease. There is also, IMO, this misconception out there that NCGS is uncomfortable and inconvenient but not damaging to body systems and so you can be cavalier about gluten consumption if you have NCGS. I don't buy into that. I think the neat black and white categories that we have used to separate NCGS from celiac disease are doing many a disservice.
    • ABP2025
      Thanks for the detailed explanation. You had mentioned that DGP-IGG might not be specific for celiac disease. Do you know what other diseases could abnormal range of DGP-IGG indicate? I'll get tests done for those diseases as well.  With respect to celiac diagnosis, I will start searching for a GI doc and get an endoscopy/biopsy done. Recently I've been having some concerning symptoms like numbness in my face, hands, and legs as well as chronic migraine. I saw a neurologist and got my brain MRI done. Nothing major was found in the MRI except some signs of migraines. I'm also having the issue of phimosis. Frustrated that we couldn't get to the bottom of what's causing numbness and headaches, I took some extensive blood work including celiac test in the effort to find the root cause and these tests were not ordered by a doctor. Not sure DGP-IGG being above range explains the numbness and headaches I have been experiencing and they could be two separate issues altogether. That's why I was curious what other disease could cause DGP-IGG to be above normal. 
    • ABP2025
      Thank you so much Scott. I read your article and it was very informative. I'll find a GI doctor to review the results and get an endoscopy to confirm celiac disease. Based on my results, could it still be NCGS?
    • knitty kitty
      @aperlo34, Those symptoms sound awfully familiar to me.  Here's what I did for mine... I got my Vitamin D up quickly by taking Vitamin D3 supplements several times throughout the day.  High dose Vitamin D supplementation is safe and effective in raising deficient Vitamin D levels.  Aim to get your level up around 80.  Our bodies work better with Vitamin D at this level.  Vitamin D will help with mood, achy joints and depression.  Vitamin A and Vitamin D will help heal eyes and intestines. https://pubmed.ncbi.nlm.nih.gov/39125420/ I was prescribed anti anxiety meds, SSRIs.  They were a bad idea because SSRIs cause further intestinal damage.  I had such awful side effects, I had to quit taking them.     Instead, I took Tryptophan supplements.  Tryptophan is needed to make serotonin, the feel good neurotransmitter.  Without enough serotonin, we feel anxious.  Tryptophan is important for intestinal health and our intestinal bacteria.  We get tryptophan (and Niacin) from our diet.  Our body can make tryptophan from Niacin Vitamin B 3.  In celiac disease, we may not be absorbing sufficient amounts of Niacin and the other water soluble B vitamins.  I took my B Complex twice a day with meals.  I took a Tryptophan supplement at bedtime.  I found adding a Lysine supplement helpful in reducing anxiety.  Lysine is an amino acid found in lots of foods like meats.  Lysine helps with intestinal health and improves serotonin use in the body.  Serotonin, besides improving mood, also stimulates tear production!!!  Influence of Tryptophan and Serotonin on Mood and Cognition with a Possible Role of the Gut-Brain Axis https://pmc.ncbi.nlm.nih.gov/articles/PMC4728667/ And... Serotonin hormonally regulates lacrimal gland secretory function via the serotonin type 3a receptor https://pmc.ncbi.nlm.nih.gov/articles/PMC5537296/ And... l-Lysine acts like a partial serotonin receptor 4 antagonist and inhibits serotonin-mediated intestinal pathologies and anxiety in rats https://pmc.ncbi.nlm.nih.gov/articles/PMC307574/ I also take Benfotiamine, a form of Thiamin Vitamin B 1, shown to promote healing in the gastrointestinal tract.  Supplementing with Benfotiamine improves anxiety and helps heal the intestines and improves brain function.  Benfotiamine needs magnesium to work properly, so I take Magnesium Threonate, a form of magnesium which gets into the brain easily and helps immensely with anxiety and thinking.  Niacin and thiamine with riboflavin and pyridoxine are used to make enzymes and energy for all healing we're going through. Magnesium and calcium can be pulled out of our bones to keep our blood levels stable.  Containing both of these minerals, broccoli and leafy greens, like kale and collards, are great for the Celiac diet. Hope this helps!   Happy Holidays!
    • aperlo34
      B-Complex B-12 1000mg (methyl sublingual) CoQ10 100mg D 3000iu  Centrum Men's Multivitamin Magnesium 400mg Omega 3 2000mg My latest labs were: D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2) My symptoms are currently - these all come and go except the dry eyes have been for a couple of months now: Joint aching (mostly knuckles), muscle twitches, now apparently dry eyes.  I'm considering looking into anxiety medication, the past 4 months have been horrible for me. I can't tell what is a real symptom anymore and what is just my mind.   
×
×
  • Create New...