Wondering. Could I be celiac?

[Killygirl]

Hi all, here is my story: 

Middle aged female, chronic iron deficiency with microcytosis. Most recent test showed severely iron deficient. B12 low normal. Taking a supplement. Can’t tolerate iron supplements so not taking (waiting for iron transfusions). Occasional loose BM’s or diarrhea with urgency but not often (1-2x/month). Regular menstrual cycles (no heavy bleeding). In 2013 had TTg and IgA (negative and normal respectively). Diagnosed with oral lichen plants 20 years ago—severe at the time, now manageable but still have it. All signs of iron deficiency (constant fatigue, hair loss, bad nails, restless legs, etc). Have been referred to GI and having endoscopy & colonoscopy in 2 weeks. No family history known of celiac. No other autoimmune issues. 

Is there anyone else who had normal IgA levels and negative TTg but biopsy came back positive for celiac? 

Thank you so much. I am just trying to manage my expectations and not worry too much. 

[Killygirl]

7 minutes ago, Killygirl said:

Hi all, here is my story: 

Middle aged female, chronic iron deficiency with microcytosis. Most recent test showed severely iron deficient. B12 low normal. Taking a supplement. Can’t tolerate iron supplements so not taking (waiting for iron transfusions). Occasional loose BM’s or diarrhea with urgency but not often (1-2x/month). Regular menstrual cycles (no heavy bleeding). In 2013 had TTg and IgA (negative and normal respectively). Diagnosed with oral lichen plants 20 years ago—severe at the time, now manageable but still have it. All signs of iron deficiency (constant fatigue, hair loss, bad nails, restless legs, etc). Have been referred to GI and having endoscopy & colonoscopy in 2 weeks. No family history known of celiac. No other autoimmune issues. 

Is there anyone else who had normal IgA levels and negative TTg but biopsy came back positive for celiac? 

Thank you so much. I am just trying to manage my expectations and not worry too much. 

Oops autocorrected planus and didn’t notice. Should be oral lichen planus not plants! Lol 

Also should mention eating more meat than ever before in past year (3-6x/week at least). 

[trents]

44 minutes ago, Killygirl said:

Hi all, here is my story: 

Middle aged female, chronic iron deficiency with microcytosis. Most recent test showed severely iron deficient. B12 low normal. Taking a supplement. Can’t tolerate iron supplements so not taking (waiting for iron transfusions). Occasional loose BM’s or diarrhea with urgency but not often (1-2x/month). Regular menstrual cycles (no heavy bleeding). In 2013 had TTg and IgA (negative and normal respectively). Diagnosed with oral lichen plants 20 years ago—severe at the time, now manageable but still have it. All signs of iron deficiency (constant fatigue, hair loss, bad nails, restless legs, etc). Have been referred to GI and having endoscopy & colonoscopy in 2 weeks. No family history known of celiac. No other autoimmune issues. 

Is there anyone else who had normal IgA levels and negative TTg but biopsy came back positive for celiac? 

Thank you so much. I am just trying to manage my expectations and not worry too much. 

A number of people on this forum have reported that experience. And don't go off of gluten before your biopsy or it may invalidate the results.

[Killygirl]

Thank you 🙏🏻 

[Scott Adams]

Given your low iron issue it makes sense for your doctor to do an endoscopy to find out what could be causing it. When you say that your blood tests were negative, I just want to point out that in the past many people who said the same thing but shared the actual results here found that they did have at least one test that indicated elevated levels, just not high enough to trigger a positive result. I'm not sure if this would be true in your case, but feel free to share the results if you have them.

[Killygirl]

3 minutes ago, Scott Adams said:

Given your low iron issue it makes sense for your doctor to do an endoscopy to find out what could be causing it. When you say that your blood tests were negative, I just want to point out that in the past many people who said the same thing but shared the actual results here found that they did have at least one test that indicated elevated levels, just not high enough to trigger a positive result. I'm not sure if this would be true in your case, but feel free to share the results if you have them.

Yes, they were definitely negative: ttg <5. 

[AlwaysLearning]

Have you ever kept a food/symptom journal? Basically keep track of everything you eat and drink alongside any symptoms you have. I did it before I learned gluten was the problem for me. (Wish gluten had been one of the food groups I had tested!)

Though I was sporadic in my note taking, just the practice of doing so meant my brain started to pay attention and remember what I had eaten the day/week before, even if I didn't write it down. If you don't end up having celiac, it could still help you figure out what foods are problematic for your oral lichen planus.

I can't tolerate iron supplements either, ending up with stomach aches. They pain wasn't soooooo bad, but something to avoid if you can. Taking lower doses or taking supplements on a full stomach does seem to help. The good news is that after you hit menopause, not losing blood each month should help avoid iron loss. But yeah, the iron deficiency I had for 30 years went away on its own pretty quickly after I went gluten free so there is some hope for improvement of at least one medical issue should you end up having celiac.

If you're hanging out with doctors, you should also make sure they are doing hormone/thyroid tests. B12 is one of the thyroid's fuels, so a B12 deficiency could be an indication that your thyroid is working too fast and burning through its fuel faster than you can eat it.

But iron and B12 deficiencies are also both common amongst vegetarians and vegans. If you are not eating meat, or not enough red meat, this is something to consider.

I know nothing about oral lichen planus, but I do know that B12 deficiency has some mouth symptoms. And certain foods are likely to cause mouth sores, such as ginger or apples. Perhaps a food diary can help you figure out new foods or food groups to test avoiding while you wait for medical answers.

Chin up while you wait for solid answers. And if you do end up deciding to go gluten free, this is also a good place to come to figure out how to decontaminate your kitchen, bathroom, makeup bag, etc.  

 

[Killygirl]

Thank you. I do eat meat especially this past year. My thyroid levels were tested and are normal. 

[Scott Adams]

1 hour ago, Killygirl said:

Yes, they were definitely negative: ttg <5. 

Understood, but I was just wondering, were they 4? or 3? This could be an indication of gluten sensitivity, as normal people's ttg levels would not be elevated at all. Personally I don't think there is much difference between someone who might have a 4.9 negative result, and a 5.0 positive one. I've not really seen much literature about who decides what the cut off marker is, how that was decided, and what it means to still have elevated levels that are just below the positive cut off.

In some ways celiac disease is similar to diabetes, and when someone's blood sugar is testing just below the cut off marker they often call it pre-diabetes, and don't consider it normal, and usually advise those with high, but not diabetes high, to take action to prevent diabetes. I hope that one day the same will be true for those with gluten sensitivity and celiac disease.

[Killygirl]

Thank you for your insight Adam. The testing I had reported that any ttg level less than 20 was normal and my result was reported as “<5”. So I think it was undetected.

[RMJ]

There are other antibody tests for celiac disease; antibodies to DGP (deamidated gliadin peptides).  Some people are only positive on those tests, not on the TTG tests.  So yes it is possible to test normal on the TTG tests and still have celiac disease on biopsy.

 

[RMJ]

3 hours ago, Scott Adams said:

Personally I don't think there is much difference between someone who might have a 4.9 negative result, and a 5.0 positive one. I've not really seen much literature about who decides what the cut off marker is, how that was decided, and what it means to still have elevated levels that are just below the positive cut off.

How are cutoffs decided?  A company gets a panel of serum samples from people with known celiac disease and people without celiac disease.  They run them in the test they are developing.  Then they choose a cutoff value that puts the most samples on the correct sides of the cutoff. Sometimes they will adjust the value up if they don’t want false positives, or down to not miss positives. And you are correct, there isn’t really much difference between 4.9 and 5.0.  If you ran the same sample 10 times you’d most likely get some of each.

[Scott Adams]

Yes, it might make sense for you to also ask to have the DPG and possibly other tests done as well.

[Killygirl]

Thank you everyone for your comments. It’s really appreciated! I have never had any other antibody tests to date. I will probably just wait for the endoscopy at this point. 

Does anyone else have oral lichen planus and later diagnosed with Celiac Disease? 

[Firedancer1]

I was never actually diagnosed. A doctor told me that he just believes I have it due to my EoE and symptoms. I’ve been feeling really awful for years and finally visited University of Cincinnati and met with a dietician. She put me on the elimination diet and I started to feel better, plus my eosinophils came down! I messed up and accidentally ate wheat, in a salad nonetheless, and I am feeling terrible! I’m shaky, nauseated, have brain fog, weakness, cramps, diarrhea, headache, feel like I’m trying to move through jello..is this a celiac attack? 

[trents]

10 minutes ago, Firedancer1 said:

I was never actually diagnosed. A doctor told me that he just believes I have it due to my EoE and symptoms. I’ve been feeling really awful for years and finally visited University of Cincinnati and met with a dietician. She put me on the elimination diet and I started to feel better, plus my eosinophils came down! I messed up and accidentally ate wheat, in a salad nonetheless, and I am feeling terrible! I’m shaky, nauseated, have brain fog, weakness, cramps, diarrhea, headache, feel like I’m trying to move through jello..is this a celiac attack? 

Sounds like it could be or maybe not celiac but gluten sensitivity. All of the symptoms you describe are common to those with celiac disease and also with gluten sensitivity. Celiac disease is not an allergy it is an autoimmune disease and involves a completely different pathway in the immune system than do allergic responses. High eosinophils would indicate allergies. So it is also possible you have a wheat allergy in addition to possible celiac disease/gluten sensitivity.

[Firedancer1]

I had a lot of blood work done recently and they did confirm I have an autoimmune disease but they don’t know what yet. I have to go see a rheumatologist. 

[Scott Adams]

Others on our forum have reported oral lichen as an issue, and here you can find those posts:

https://www.celiac.com/search/?q=lichen&quick=1 

[Posterboy]

On 5/3/2021 at 12:02 AM, Killygirl said:

Oops autocorrected planus and didn’t notice. Should be oral lichen planus not plants! Lol 

Also should mention eating more meat than ever before in past year (3-6x/week at least). 

Killygirl,

Try taking you some Lysine.

It has been shown to help mouth sores...

https://www.researchgate.net/publication/267202860_Clinical_success_of_lysine_in_association_with_serumal_and_salivary_presence_of_HSV-1_in_patients_with_recurrent_aphthous_ulceration

It does this, in part, by helping control stress levels in your body.

Taking Lysine can help lower Cortisol levels in the body.

Here is the research about it.

Entitled" Oral treatment with L-lysine and L-arginine reduces anxiety and basal cortisol levels in healthy humans"

https://pubmed.ncbi.nlm.nih.gov/17510493/  

It is worth noting that Lysine can be taken ahead of an ulcer outbreak to keep it at bay.

See this research entitled "Lysine as a prophylactic agent in the treatment of recurrent herpes simplex labialis"

https://pubmed.ncbi.nlm.nih.gov/6438572/

We get low in our Amino Acids and our B-Complex's when we get low in our Stomach Acid.

IN Fact taking a B-Complex has been shown to treat mouth ulcers...

See this research about it entitled  "Recurrent aphthous ulceration: vitamin B1, B2 and B6 status and response to replacement therapy" IE B-Vitamin Supplementation treats Mouth Ulcers....

https://pubmed.ncbi.nlm.nih.gov/1941656/

I only know it (B-Vitamins and the Amino Acid Lysine) helped mine!

It should also be noted Riboflavin aka Vitamin B2 can help Geographic Tongue as well.

https://glutenfreeworks.com/health/tongue-magenta-swollen/

Good luck on  your continued journey....

I hope this is helpful but it is not medical advise.

Posterboy,

[Killygirl]

Thank you everyone for your support. I am so grateful. I have my colonoscopy and upper endoscopy this morning. My colon is perfectly normal (thankfully) but my small intestine had edema. He took lots of biopsies but he told me at the end of the procedure I probably have celiac disease. I will know for sure in the next week or so. I can’t believe it but it would be such a relief to have an explanation for all the thing I have been experiencing for so many years. I will update you once I get my results. 

[trents]

Please do.

[RMJ]

I hope the biopsies give you a clear answer!

[Scott Adams]

Let us know when you find out more info!

[Killygirl]

I will. Unfortunately I’ve gone down the rabbit hole of medical google searching for “edema” relating to small bowel appearance and can’t find any publication that relates that term to celiac findings. Adenocarcinoma—yes, Crohn’s disease—yes. But nothing about celiac. So I’m sitting at home, post-procedure drugged head, quietly freaking out. 

[Killygirl]

Thank you 🙏🏻 

New Question: how long do people typically wait for their results?