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      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Input On Pathology Report
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So, I finally got a copy of my pathology report. I'm going to include all of my tests from this year so that it is all in one place. To recap my previous posts, my Dr. isn't giving me a diagnosis. He is stopping just short of saying "you have..." They are currently treating me as though I have crohn's even though I don't entirely fit into that category. Looking up even mild cases, I don't nearly go to the bathroom that much. Anyway, as far as I know I am down to either crohn's or celiac as the culprit. One of you had mentioned the possibility of another problem, but I'll have to go back and find what that was (and which of you said that. Sorry, can't remember off the top of my head who).

Please let me know your opinions. Even if you think there might be another problem to throw into the mix.

August 20

Pathology report

Diagnosis

A: Duodenum, biopsy

1. small bowel mucosa without diagnostic abnormality

2. no histologic evidence of celiac disease or other enteropathy

B: Ileum, terminal, biopsy

1. nonspecific chronic active ileitis

2. no dysplasia or malignancy

C: Colon, random, biopsy

1. colonic mucosa with no diagnostic abnormalities

2. no evidence of active inflammatory bowel disease

3. no dysplasia

Comments

B: The biopsy shows a chronic ileitis without specific features, differential considerations include medication induced injury versus crohn's disease. The findings include a patchy distribution of inflammation, mild active inflammation, focal aphthous ulceration, mild crypt distortion, no pyloric metaplasia and no granulomatous inflammation.

Specimen/Gross description

Duodenum, biopsy:

A) Received are 4 pink-tan soft tissues averaging 2mm. Entirely submitted in toto in a single cassette.

Terminal, ileum, biopsy:

B) Received are 4 pink-tan soft tissues ranging from 2 to 3mm. Tissue is submitted in toto in a single cassette.

Colon, random, biopsy:

C) Received are multiple (approximately 8) tan-pink soft tissues averaging 2mm. Entirely submitted in toto in 1 cassette.

September 24

Pillcam Endoscopy Report

Procedure info & findings

There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than other.

Summary & recommendations

This is a complete test. There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than others. The findings are suspicious for crohn's disease, although if the patient has been taking NSAIDS, NSAID enteropathy remains a possibility.

June 26

Lactose Breath test

Normal

July 5

Immunoglobulin A, Qn, Serum Result 235 Unit mg/dl Range 80-450

October 10

Sedimentation Rate-Westergren Result 9 Unit mm/hr Range <20

April 23

Basic Metabolic Panel

sodium Result 130 Range 135-145

potassium Result 4.0 Range 3.5-5.0

chloride Result 105 Range 98-107

co2, total Result 25 Range 23-31

anion gap Result 9 Range 5-18

glucose Result 83 Range 65-100

calcium Result 9.3 Range 8.5-10.5

bun Result 9 Range 8-25

creatine Result 0.78 Range 0.57-1.11

bun/creat ration Result 12 Range 10-20

GFR if not african american Result >60 Range >60

IGA tissue transglutaminase AB Result <1.2 Standard range <4

June 1

C-reactive protein, quant Result <2.0 Range <5

TSH Result 3.87 Range 0.30-5.00

Hemoglobin Result 13.8 Range 12.0-16.0

Hematocrit Result 41.3 Range 33.0-51.0

MCV Result 96 Range 80-100

MCHC Result 33.4 Range 32.0-36.0

MCH Result 32.0 Range 26.0-34.0

RDW Result 13.9 Range 11.5-15.5

platelets Result 315 Range 140-440

neutrophils Results 46 Range 42-72

lymphs Results 45 Range 20-44

monocytes Results 4 Range 0-11

eos Results 2 Range 0-7

basos Results 1 Range <3

neutrophils (absolute) Results 2.2 Range 1.7-7.0

lymphs (absolute) Results 2.1 Range 0.9-2.9

monocytes (absolute) Results 0.2 Range <0.9

eos (absolute) Results 0.1 Range <0.5

basos (absolute) Results 0.0 Range <0.3

RBC Results 4.31 Range 4.00-5.20

WBC Results 4.8 Range 4.5-11.0

That is everything, I think. My Lymphs came back high by a little bit. I don't really use NSAIDs, so the damage to my small intestines is not from that. I do take percocet and get epidural cortisone shots (no more than three shots in a year). I don't think either of those would do anything because percocet has acetaminaphine, and I haven't found anything linking the shots to intestinal problems. I am anxious to hear input from anyone to help give me a little direction. I am gluten free now, and am in the process of buying secondary kitchen items for myself since we have a compromised kitchen. I am treating gluten as though I have celiac and am pretty sensitive. I found out after an icky stomach that the godiva hot chocolate I was drinking was cross-contaminated in its processing. I though I had a dairy issue, but after going one month without it there was no change at all. My previous, and shorter, dairy free trial period may have coincided with allergies. I do know that I can't have large servings of dairy, because I will have problems from that. No more "american size" portions for me. ha ha.

Thanks to all for your thoughts. I know this is really long and I appreciate you taking the time to look.

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GottaSki    459

Hi Megan!

I went back to check your previous post because I couldn't remember your story.

How long have you been gluten-free now? Any improvement in symptoms?

Did you end up taking meds for Crohn's?

Is the list above everything you were tested for? There are no celiac antibody blood tests listed. Only Total Serum IgA - this is meaningless without further celiac specific tests. These tests should have been done before you removed gluten - but still remain important if you haven't had them. Edit after I re-read - you did have one celiac test tTG-IgA.

Your Thyroid Stimulating Hormone (TSH) is in "normal" range, but is on the high side of normal. The TSH is actually a pituitary hormone test, I suggest requesting thyroid tests of Free T3, Free T4 and Thyroid antibody blood tests.

I can't remember your symptoms, have you had an ANA? This test will not indicate a specific autoimmune disease, but can indicate that there is a possibility of AIs. Depending on symptoms maybe add RF - Rheumatoid Factor.

So I'd add:

tTG-IgA and IgG

EMA - IgA

DGP - IgA and IgG

Thyroid - Free T3, T4 and thyroid antibodies

ANA

RF

Some others may have other suggestions.

Oh...any nutrient testing?

Add: Bs, D, K, Iron, Ferritin, Copper, Zinc

Hope that's not overwhelming - I'm all too familiar with endless "normal" blood results ;)

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nvsmom    332

Lisa gives great advice! I was going to say much of the same (although she made more suggestions than I thought of) but I was going to add my own story about the TSH. I have had hypothyroid symptoms for 15 years. My TSH was always on the high side of normal; I just did not realize how common that is in Hashimoto's patients. If the doctors had run the other thyroid tests that Lisa mentioned, I would have been treated and probably felt much better in my 20's and 30's.

Most hypothyroid patients do not feel better unless their TSH is well below a 2; a 1 is usually cited as very good. Google hypothyroid symptoms and treatments and see if any of it appears to apply to you. Many celiac symptoms overlap with thyroid problems.

Good luck and best wishes. :)

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Lisa and Nicole,

Thanks for your suggestions. I have not had any nutrient testing, but I will be requesting these at my next appointment. I have been gluten free since early September, but I have had many mistakes along the way and quite a few cc's. So, I have had a few good strong weeks. I do feel a little better, not as many upset stomachs or severe cramps. I am not familiar with an ANA, and not sure if it would do any good since I already have an AI disease, Hashimoto's.

I have had my thyroid out and am completely dependant on meds. My levels were just checked again, but I didn't have them in front of me when posting. They did go back down in the 2's. My endocrinologist used to impress me with his willingness to work based on my symptoms and numbers. Now he seems content with me in the 2's even though I don't feel well at that level. Like you said, Nicole, I felt my best when I was around 1. After adding cytomel, he seemed fine with a higher number. I just switched back to synthroid only, and I am absolutely sure my dose is too low right now. I forgot how miserable this feels, and there is nothing I can do about it except wait for my next test tomorrow and hope the results are enough for him to up my dose. bleh!

Since I don't think I ever really gave my story, just some questions here and there, I can give you a quick recap. For the last few years I have felt a little off. It wasn't until a year ago I really had the feeling that there was an underlying issue with my weight and inability to lose it or at least this feeling I had around my midsection. Just one of the feelings that you can't explain or shake off. It just nags away. This year I went to a nutritionist for some guidance. All I really wanted was to feel better. Weight loss would be a bonus. With her help I realized I had a problem with gluten. I went to my doctor to ask for celiac testing, and she ran one celiac test and a metabolic panel. My test was negative, but when I asked her if there were more tests we could do or what else we could look at and explained my worsened symptoms during the heavy gluten loading she had me do, she diagnosed me with celiac based on my symptoms and sent me on my way. No info. No advice. Just kind of gave me the feeling that she diagnosed me because she thought I want to have it. So, after feeling unsatisfied I finally sought a second opinion from a GI doc. He would run a round of tests, find no answers, have me come in, and order more tests. They have not ruled anything out, nor have they given any diagnosis. All I have found for sure is that I have ulcers and inflammation in my small intestine. On the one hand, that sucks that there is damage. On the other, I'm releaved to have proof that I'm not being a hypochondriac. Now, I just feel lost. They are treating without saying that they are treating the right thing. All I want is to get better and feel good. It has been so long that I don't remember what it feels like anymore.

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mommida    158

You have documented damage in the small intestine. ( Did you get any picutes from the pill cam?)

Remember, I am not a doctor.

I feel the signs of a food/protein are showing up in your results. There is damage, but it is not out of the normal ranges. The eos, eosinophil count, is higher in the specific area tested. (In adults diagnoses is done by the elevated count range)

It seems you have identified gluten as an intolerance. (doctor's will feel very comfortable with taking just your word for "official" intolerance diagnoses for that.) You may have to do an elimination diet to identify other food intolerances.

The damage in yoursmall intestine is now a primary concern for your nutrient levels. Pernicious anemia is caused by the gut lining lacking the intrinsic factor to absorb vitamin B12. This then leads to severe anemia. The average American is shown to be lacking vitamin B12. (One episode of Mystery Diagnoses did show the patient having "D" and stomach pains as the primary symptoms. I was in fact swearing up and down it had to be Celiac, which they finally said testing was negative for in the last few minutes before the diagnoses.)

I didn't see any testing with a negative result for H. Ployri.

At this point, Stay off gluten, keep a food journal, ask for more clarification of your test reaults from your doctors, ask for a list of all disorders they have ruled out, any more tests that could be done, and prepare for an elimination diet to determine your food intolerances. (you may want to do this after the holdiays. I'm not going to tell you it is easy. All top 8 allergens eliminated from your diet instantly seems very limiting. I would think you should get any further testing done to make sure a diagnosable disorder isn't causing the inablility to eat some of these foods.

Like the connection betwwen Celiacs not having the enzyme associated with papaya. (sorry I am having a really bad brain fart and can't think of the proper way to explain this or the name of the specific enzyme I'm talking about.

Hope some of this helps.

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nvsmom    332

Lisa and Nicole,

Thanks for your suggestions. I have not had any nutrient testing, but I will be requesting these at my next appointment. I have been gluten free since early September, but I have had many mistakes along the way and quite a few cc's. So, I have had a few good strong weeks. I do feel a little better, not as many upset stomachs or severe cramps. I am not familiar with an ANA, and not sure if it would do any good since I already have an AI disease, Hashimoto's.

I have had my thyroid out and am completely dependant on meds. My levels were just checked again, but I didn't have them in front of me when posting. They did go back down in the 2's. My endocrinologist used to impress me with his willingness to work based on my symptoms and numbers. Now he seems content with me in the 2's even though I don't feel well at that level. Like you said, Nicole, I felt my best when I was around 1. After adding cytomel, he seemed fine with a higher number. I just switched back to synthroid only, and I am absolutely sure my dose is too low right now. I forgot how miserable this feels, and there is nothing I can do about it except wait for my next test tomorrow and hope the results are enough for him to up my dose. bleh!

Since I don't think I ever really gave my story, just some questions here and there, I can give you a quick recap. For the last few years I have felt a little off. It wasn't until a year ago I really had the feeling that there was an underlying issue with my weight and inability to lose it or at least this feeling I had around my midsection. Just one of the feelings that you can't explain or shake off. It just nags away. This year I went to a nutritionist for some guidance. All I really wanted was to feel better. Weight loss would be a bonus. With her help I realized I had a problem with gluten. I went to my doctor to ask for celiac testing, and she ran one celiac test and a metabolic panel. My test was negative, but when I asked her if there were more tests we could do or what else we could look at and explained my worsened symptoms during the heavy gluten loading she had me do, she diagnosed me with celiac based on my symptoms and sent me on my way. No info. No advice. Just kind of gave me the feeling that she diagnosed me because she thought I want to have it. So, after feeling unsatisfied I finally sought a second opinion from a GI doc. He would run a round of tests, find no answers, have me come in, and order more tests. They have not ruled anything out, nor have they given any diagnosis. All I have found for sure is that I have ulcers and inflammation in my small intestine. On the one hand, that sucks that there is damage. On the other, I'm releaved to have proof that I'm not being a hypochondriac. Now, I just feel lost. They are treating without saying that they are treating the right thing. All I want is to get better and feel good. It has been so long that I don't remember what it feels like anymore.

You're right, Hashimoto's can cause a positive ANA too. A bunch of the AI disorders do. I would look at getting your thyroid levels to a good spot for you. As you know hypo symptoms match many celiac symptoms (and others) and could be making it more difficult to diagnose your problem. My thyroid is not being well treated yet so I still don't feel really well even though I'm gluten-free, but like you, my GI symptoms are better now.

Many of the AI disorders cause some stomach issues too, but I don't know about the damage. Crohns, colitis, and celiac and the ones I've heard about that cause damage. Celiac damage is usually in the duodenum and not the illieum. Casein in milk can cause villi blunting too.

If I had to guess, with zero medical training, on what's wrong (from what you've told us) I would guess you have celiac (one of the 25% who does not show up in blood tests) or non-celiac gluten intolerance. It looks like your celiac hit further down than most people's though... It could be infection of some sort. Could be Crohns. Could be milk allergies. With those issues, if you have NCGI, if you cut out gluten you will have some improvement of symptoms but not all since there could be other issues at work. It sounds like you are low on free T4 and T3 too so that will affect you too.

I think you've got a mixed bag that's going to take a while to sort out. :( I would stay gluten-free since the gluten-free diet doesn't start to feel good for many for a few months. I personally didn't feel better for a month or so. I would work at getting your thyroid meds in line... I know that takes a while (I was diagnosed hypo this summer and I am no where near being happy with my meds yet).

I wish I could offer you help. I'm not educated in this so I can't be of much use. Good luck... let us know how it's coming along, okay?

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GFinDC    609

Hi Megan,

Have you tried eliminating common food intolerances like dairy and soy? Niightshades are another big one. Some people aere trying nettle tea to help with inflammation, it might be worth a try.

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You have documented damage in the small intestine. ( Did you get any picutes from the pill cam?)

Remember, I am not a doctor.

I feel the signs of a food/protein are showing up in your results. There is damage, but it is not out of the normal ranges. The eos, eosinophil count, is higher in the specific area tested. (In adults diagnoses is done by the elevated count range)

It seems you have identified gluten as an intolerance. (doctor's will feel very comfortable with taking just your word for "official" intolerance diagnoses for that.) You may have to do an elimination diet to identify other food intolerances.

The damage in yoursmall intestine is now a primary concern for your nutrient levels. Pernicious anemia is caused by the gut lining lacking the intrinsic factor to absorb vitamin B12. This then leads to severe anemia. The average American is shown to be lacking vitamin B12. (One episode of Mystery Diagnoses did show the patient having "D" and stomach pains as the primary symptoms. I was in fact swearing up and down it had to be Celiac, which they finally said testing was negative for in the last few minutes before the diagnoses.)

I didn't see any testing with a negative result for H. Ployri.

At this point, Stay off gluten, keep a food journal, ask for more clarification of your test reaults from your doctors, ask for a list of all disorders they have ruled out, any more tests that could be done, and prepare for an elimination diet to determine your food intolerances. (you may want to do this after the holdiays. I'm not going to tell you it is easy. All top 8 allergens eliminated from your diet instantly seems very limiting. I would think you should get any further testing done to make sure a diagnosable disorder isn't causing the inablility to eat some of these foods.

Like the connection betwwen Celiacs not having the enzyme associated with papaya. (sorry I am having a really bad brain fart and can't think of the proper way to explain this or the name of the specific enzyme I'm talking about.

Hope some of this helps.

Ahh.. good old brain farts. I love those. Mine tend to happen at the most inopportune time. I know exactly what I'm going to say, and the *poof* it's gone right when it should be coming out of my mouth. Meanwhile I feel like people are looking at me thinking I just shouldn't be talking. :)

I do have pictures from my pillcam. I don't know how to post them, though. There doesn't seem to be a lot in the pictures until the ileum. Those two were harder to see because the camera caught up to the "sediment" which is hard to see through. The damage isn't horrible, so I caught it before it got real far.

My results never showed anything on H. pylori which is surprising. I would have thought that they automatically tested for it in this situation. I will have to ask about that along with getting nutrient testing. I also have to convince the doc to check copper and ceruloplasmin, since I am feeling a bit concerned about my pancreas as of late. There is a mild pain and discomfort behind my stomach that radiates to my back. There was one night it was so bad that I almost went to the ER on my lunch break, but I figured I was overreacting to my back pain. I have herniated discs that cause a lot of problems, but this pain was just below that. Anyhow, it isn't bad. Just sort of there and noticeable. I'm keeping an eye on it for now. The doc should be happy with me when I go into my appointment with a list of tests I want done and questions I want answered. I don't care though.

I have multiple issues at play- trying to get my thyroid hormones back on track, and figure out what foods I am having issues with. First thing after the holidays I will be starting an elimination diet. I need to know. As hard as that will be, it is worth it. It has been a miserable year healthwise for me. One thing after another. And if the thyroid and GI problems weren't enough, I found a breast lump that I now have to monitor for a couple more months. I'm sure it's nothing, except annoying. Just one more thing to throw into the mix. Aaarrgh! :angry:

Thanks everyone for all the advise. I am taking notes and preparing for the next step.

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mommida    158

You are right to have your pancreas checked. I would just reading (light skimming tease article) about the pancreas and how some some very early signs are some things I tend to take for granted because of Celiac. Fat malabsorbtion and weight loss.

A breast lump could be a normal reaction to too much caffiene. They never seem to put that information out there. I had found a breast lump when I was about 27. Totally freaked out, because nobody talked about some breast lumps that are not cancer.

I am wishing you positive healing thoughts!

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    • https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ ^Newbie 101 section PS you are diagnosed celiac right? Sorry but a standard question as you should get the diagnosis out of the way before going gluten-free.
      https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ ^ Have a nice list of food alternatives, including condiments. NOTE we suggest a whole foods only diet starting off to boost healing. Also we suggest dropping anything with oats or dairy for the first few months. Oats some celiacs react to regardless of gluten-free or not, Dairy is broken down by enzymes produced by the tips of your villi, if your celiac these are normally damaged and cause digestion issues or intolerance to dairy.
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    • Interesting the Teflon was the substrate /material the gluten "stuck to" with a higher ppm of cc a synthetic man made versus an organic material iron . Based on her writing further exploration is not likely to get funding but perhaps from this preliminary finding if repeated celiacs in shared households should avoid teflon products.  My husbands bachelor pots and pans were a great set of stainless steel. Our wedding set of dishes mostly have broken.  I purged all pre diagnosis wood , plastic, and and old or very used ceramic and with my son and I both affected the household went completely gluten free.  I wish the budding scientist much success, but hope she followed her own data and ditched all teflon.    
    • Yikes!   Yes!  I will correct.  Thank you. I am so used to being GLUTEN FREE!
    • Maybe you should consider a bone marrow biopsy.   Your hematologist might be on to something.  At least it would rule out several things.  Based on this link, it could be related to SIBO or another AI issue.   http://www.medicinenet.com/neutropenia/article.htm Another possibility is Mast Cell Activation Syndrome or Mastocytosis.  That could explain the WBC, low BP, fatigue, etc.   A bone marrow biopsy is used to diagnose mastocytosis.    https://www.celiac.com/gluten-free/blogs/entry/1931-mast-cell-activation-syndrome-madness/ https://tmsforacure.org/overview/
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