Not Celiac.....right?

[frankenstein]

Thanks I think I get what you mean. FODMAP initially provided me relief when i did it last year with different symptoms. This time around, when I went back on it, it is not doing much. I guess I'll do the genetic one.

If I understand correctly about "total IGA test ", you are saying by doing it, it can show me if i have the rare condition, which would call in to question my initial results? Is that right?

For developing celiac, is it known what causes it to develop or progress?

[knitty kitty]

https://www.medicalnewstoday.com/articles/how-long-are-your-intestines#comparison

[trents]

4 minutes ago, frankenstein said:

Hi please see post 1 for what i had done in 2018 through LabCorp. That was the one that had the weak positive. Sorry I don't know all these terms so I am just writing down what the paper says. 

Do you mean this, "Deamidated Giladin Abs, Iga was a weak positive of 27"

No, I don't think that is referring to total IGA but rather to the Deamidated Gliadin ABS. Celiac antibody testing includes several IGA fractions as part of the total IGA spectrum. If the total IGA is deficient or low, then it pushes the individual fractions down toward negative test values.

[trents]

4 minutes ago, frankenstein said:

Thanks I think I get what you mean. FODMAP initially provided me relief when i did it last year with different symptoms. This time around, when I went back on it, it is not doing much. I guess I'll do the genetic one.

If I understand correctly about "total IGA test ", you are saying by doing it, it can show me if i have the rare condition, which would call in to question my initial results? Is that right?

For developing celiac, is it known what causes it to develop or progress?

The development of active celiac disease requires two things: 1. Genetic potential and 2. A triggering stress event such as a viral infection. Without the triggering event, the genetic potential remains latent.

[Scott Adams]

PS - There are MANY people on this forum who had a single positive blood test for celiac disease, and a negative biopsy, or vice versa. Unfortunately many doctors simply say "no celiac disease, you can keep eating gluten," but that does not explain the whole picture. People like this are in the grey area where they could still have non-celiac gluten sensitivity, and will continue to have symptoms until they go gluten-free. Some may continue to eat gluten and end up one day with full blown celiac disease. I think people should err on the side of caution, take the test results seriously, and at least try a gluten-free diet for some time to see if they get relief. 

I've told my story here several times, but you've probably not heard it, but my allergist back in the 1980's told me to rotate my diet and only eat wheat 1-2 times per week, due to my high food allergy test results (wheat was off the charts). At the time I had some fairly minor skin rashes and other minor symptoms, but nothing serious, so I ignored him and more or less ate gluten daily. Within a few years I got full blown celiac disease (I think after contracting a virus and getting really sick), and it took me several more years and a lot of suffering to get diagnosed. I still wonder if I would have ever gotten celiac disease had I taken his advice and began rotating my diet back then? There is no way to tell now, but your warning sign--a positive Deamidated Giladin Abs, IgA test is a much more specific warning sign than I had back then--which was a high positive IGG allergy test. Most people fall into the grey area of NCGS, rather than the full blown celiac disease area, but I can attest that those in the grey NCGS area should do what they can to avoid ending up in the full blow celiac disease camp! 

[trents]

7 minutes ago, frankenstein said:

Thanks I think I get what you mean. FODMAP initially provided me relief when i did it last year with different symptoms. This time around, when I went back on it, it is not doing much. I guess I'll do the genetic one.

If I understand correctly about "total IGA test ", you are saying by doing it, it can show me if i have the rare condition, which would call in to question my initial results? Is that right?

For developing celiac, is it known what causes it to develop or progress?

What "rare condition" do you refer to?

[knitty kitty]

https://www.hopkinsmedicine.org/health/conditions-and-diseases/immunoglobulin-a-deficiency

[Scott Adams]

2 minutes ago, trents said:

What "rare condition" do you refer to?

I think natural IGA deficiency. 

11 minutes ago, frankenstein said:

If I understand correctly about "total IGA test ", you are saying by doing it, it can show me if i have the rare condition, which would call in to question my initial results? Is that right?

Yes, it's possible that one or more of the other blood tests you had would have been positive, if you do indeed have IGA deficiency. 

[frankenstein]

Thanks. This is a bit overwhelming. I don't think I have it. I'll continue to eat gluten free for some time and see how I feel. Currently it makes me feel worse so we'll see. I wish for the bloodwork done this year that I had been told to eat gluten for six weeks before since my diet was different this year because of my issues to see if the thing in 2018 was a false positive (it seems like opinion varies on the amount of false positives out there, particularly weak false positive). I'll do the genetic thing and hope it says no but realize if it says I have the gene it may be off. I am pretty confident in the biopsy from 2018 and fairly confident in the 2021 one.

 

Do people ever feel worse doing gluten free? Like if I continue to feel worse should I assume this ain't it? I know if it works for you you wouldn't feel better right away though.

[trents]

Yes, people do often feel worse for 2-3 weeks after going gluten free due to withdrawal. I'm sure you will be skeptical of this but gluten has some addicting properties similar to opiates. 

[frankenstein]

4 minutes ago, trents said:

Yes, people do often feel worse for 2-3 weeks after going gluten free due to withdrawal. I'm sure you will be skeptical of this but gluten has some addicting properties similar to opiates. 

Understood. Just to note though I really really don't have much gluten. Like especially when in low FODMAP it's been no gluten. My current take is the fodmaps are making me feel crummy since there's not much I'm eliminating diet wise I haven't been already. And I nearly always make my food.

If one feels bad from gluten before going gluten free, how many days later would they feel it? I'm guessing the answer is is that it varies

[knitty kitty]

I found the Autoimmune Protocol Diet very helpful.  The book The Paleo Approach by Dr. Sarah Ballantyne explains how to decrease inflammation and promote healing in the intestines by changing one's diet.  It's more restrictive than the low Fodmaps diet, but it works better.  

I felt better within three weeks on the AIP diet while I had been miserable on the low Fodmaps diet.  

[trents]

1 hour ago, frankenstein said:

Understood. Just to note though I really really don't have much gluten. Like especially when in low FODMAP it's been no gluten. My current take is the fodmaps are making me feel crummy since there's not much I'm eliminating diet wise I haven't been already. And I nearly always make my food.

If one feels bad from gluten before going gluten free, how many days later would they feel it? I'm guessing the answer is is that it varies

Fee what? You mean feel better? The withdrawal lasts for two to three weeks I think and once past that I think within a few weeks you should start to feel better. Maybe sooner if we are dealing with NCGS.

[frankenstein]

3 minutes ago, trents said:

Fee what? You mean feel better? The withdrawal lasts for two to three weeks I think and once past that I think within a few weeks you should start to feel better. Maybe sooner if we are dealing with NCGS.

Sorry no I mean outside of a testing scenario. If a person with celiac eats gluten, how long after eating do you feel worse from it?

[trents]

12 minutes ago, frankenstein said:

Sorry no I mean outside of a testing scenario. If a person with celiac eats gluten, how long after eating do you feel worse from it?

It varies tremendously from person to person. Some become ill immediately while others the next day. It takes me two hours from the time I consume a significant amount of gluten. About the time it takes for my stomach to empty into my duodenum. Then I get intractable vomiting for a couple of hours and then diarrhea for a couple of hours. Before diagnosis and before going gluten free, the symptoms were rather vague and inconsistent - small amount of GI discomfort at times and occasional diarrhea. Once you have been off of gluten for a significant period you become much less tolerant of exposure to it than before if you are a celiac. Like many things that aren't good for you, you may develop tolerance for it while getting consistent exposure but lose it when you quit.

Many people have little or no symptomology and find out incidentally that they have celiac disease when they are getting investigated for something else or they get tested at the request of a near relative who does have celiac disease. A couple of recent, fairly large (around 300 people) family studies, one by the Mayo Clinic, found that 40% of the first degree relatives of those with active celiac disease had celiac disease themselves. Most had no clue and many had no symptoms, but were tested as part of the study. They were biopsied for confirmation. We call those who are asymptomatic, "silent" celiacs.

Edited September 29, 2023 by trents

[frankenstein]

8 minutes ago, trents said:

It varies tremendously from person to person. Some become ill immediately while others the next day. It takes me two hours from the time I consume a significant amount of gluten. About the time it takes for my stomach to empty into my duodenum. Then I get intractable vomiting for a couple of hours and then diarrhea for a couple of hours. Before diagnosis and before going gluten free, the symptoms were rather vague and inconsistent - small amount of GI discomfort at times and occasional diarrhea. Once you have been off of gluten for a significant period you become much less tolerant of exposure to it than before if you are a celiac. Like many things that aren't good for you, you may develop tolerance for it while getting consistent exposure but lose it when you quit.

Many people have little or no symptomology and find out incidentally that they have celiac disease when they are getting investigated for something else or they get tested at the request of a near relative who does have celiac disease. A couple of recent, fairly large (around 300 people) family studies, one by the Mayo Clinic, found that 40% of the first degree relatives of those with active celiac disease had celiac disease themselves. Most had no clue and many had no symptoms, but were tested as part of the study. They were biopsied for confirmation. We call those who are asymptomatic, "silent" celiacs.

Thanks. Helpful information. So much of my stuff seems to not fit the celiac experience I dunno.

[frankenstein]

Just to close the loop here, a genetic test confirmed that this is not celiac. Wishing all good health.

[trents]

Thanks for the update. It's good to know what you don't have some times.

[Scott Adams]

17 minutes ago, frankenstein said:

Just to close the loop here, a genetic test confirmed that this is not celiac. Wishing all good health.

Thanks for the update, and this wouldn't eliminate NCGS, so if a gluten-free diet relieves your symptoms then you may have NCGS.

[trents]

I would also add that the genetic mapping for celiac disease is still somewhat if a work in progress.

[Wheatwacked]

1 hour ago, frankenstein said:

Just to close the loop here, a genetic test confirmed that this is not celiac. Wishing all good health.

Sorry for coming late to the party.

Having ruled out Celiac the next step to diagnosing NCGS is a full on gluten free diet to see if there is improvement and a subsequent Gluten Challenge to see if it returns.

On 9/29/2023 at 1:48 PM, frankenstein said:

relief when i did it last year with different symptoms

This variability is one of the things that makes gluten sensitivity so hard to diagnose.

On 9/29/2023 at 5:01 PM, frankenstein said:

Do people ever feel worse doing gluten free?

Emphatically yes.   People with Celiac and NCGS develope nutritional deficiency due to malabsorption in the case of Celiac Disease villi damage (not you) or food avoidance.

You catagorically deny the possibility of vitamin and mineral deficiency.

Around 40% of US, Canadian, Irish and UK adults have low or deficient (less than 29 ng/ml) vitamin D.  Vitamin D deficiency is already extremely common, affecting approximately 42% of the U.S. population, according to research published in the National Institutes of Health database.  If you posted yours, sorry I missed it.

          Vitamin D Fact Sheet for Health Professionals   "In fact, 2013–2016 NHANES data showed that 92% of men, more than 97% of women, and 94% of people aged 1 year and older ingested less than the EAR of 10 mcg (400 IU) of vitamin D from food and beverages "

Edited October 13, 2023 by Wheatwacked

[Wheatwacked]

Choline

90% of us westerners do eat the Adequate Intake of choline.  With avoidance of eggs, liver and beef for cholesterol it is very hard to get enough.  It takes 10 cups of cooked brocolli or 3 large eggs a day.

     Choline Fact Sheet for Health Professionals     "Most people in the United States consume less than the AI for choline. An analysis of data from the 2013–2014 National Health and Nutrition Examination Survey (NHANES) found that the average daily choline intake from foods and beverages among children and teens is 256 mg for ages 2–19 [14]. In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women. Intakes from supplements contribute a very small amount to total choline intakes."     

Thiamin  You do complain of severe gastrointestinal disorders

Thiamin Fact Sheet for Health Professionals    "An analysis of data from the 2003-2006 National Health and Nutrition Examination Survey showed that only 6% of the U.S. population has a usual intake below the EAR"... In addition to insufficient intakes of thiamin from the diet, the causes of thiamin deficiency include lower absorption or higher excretion rates than normal...A more common manifestation of thiamin deficiency in the United States is Wernicke-Korsakoff syndrome [2]. This disorder is about 8–10 times more common in people with chronic alcoholism than in the general population, but it can also develop in patients who have severe gastrointestinal disorders

 

[Wheatwacked]

If the doctors don't have any better ideas, I would suggest the trial GFD.

From the Professional Fact Sheets:

• Recommended Dietary Allowance (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals.
• Adequate Intake (AI): Intake at this level is assumed to ensure nutritional adequacy; established when evidence is insufficient to develop an RDA.
• Estimated Average Requirement (EAR): Average daily level of intake estimated to meet the requirements of 50% of healthy individuals; usually used to assess the nutrient intakes of groups of people and to plan nutritionally adequate diets for them; can also be used to assess the nutrient intakes of individuals.
• Tolerable Upper Intake Level (UL): Maximum daily intake unlikely to cause adverse health effects.

Those RDA's recommended are the minimum not the optimum.   In any case you should seriously consider your vitamin D plasma status 70 to 90 mg is the level our bodies maintain in unrestricted sunlight in the summer\  increasing Choline intake to around 1000 mg a day for gastrointestinal relief (fat metabolism, and taking a large Thiamine supplement.

All within the Tolerable Safe Upper Limit, and cost of a bottle of each less than the cost of a doctors appointment.   Worse case scenario, they don't help and you wasted $60.

[Wheatwacked]

And to return to the question: 

1 hour ago, Wheatwacked said:

Do people ever feel worse doing gluten free?

When you eat GFD you do not get the vitamin and minerals that are added to fortify processed foods in the US, but not gluten free processed foods.

"The most common sources of thiamin in the U.S. diet are cereals and bread.  Professional Fact Sheet.

Meaning a gluten free diet does not supply the Thiamine  the government has determined must be added to processed foods to keep the population from deficiency.  As knitty kitty mentions, it can deplete rapidly without that fortification.

[Stumplet]

On 9/28/2023 at 11:57 PM, knitty kitty said:

@frankenstein,

I agree with your dietician.  Iron deficiency anemia can affect your antibody production.  Was your iron levels still low at the time of the second test?  

You said you were limiting the amount of gluten due to the low Fodmap diet, so not eating enough gluten prior to the tests can give false negatives. 

Has your Vitamin D level been checked?  Vitamin D works like a hormone to regulate your immune system.  

Dry eyes are symptomatic of malabsorption of omega three fats.  

Have you been tested for any other vitamin deficiencies?  Ask for an Erythrocyte Transketolase test to see if you are deficient in Thiamine.  Thiamine deficiency can cause Gastrointestinal Beriberi.  The symptoms of Gastrointestinal Beriberi can mimic Celiac Disease symptoms.

Get a genetic test done.  You can't argue with your genes. 

Apologies for jumping on here, but I found your comment very interesting.

For some background I have coeliac symptoms, but tested negative (or more accurately below threshold for a postive test - very small amounts of antibodies were there) on tTG, and DCP. I am not igA deficient. I have the HLA-DQ8 gene.

I have been looking into getting the anti-endomysial blood test to see if that was positive however your comment made me pause.

I have persistantly low ferritin (under 10), dipping into anemia sometimes. I have persistently low vitamin D. I periodically treat both of these with supplements to get them into normal range. My ferritin is currently low again. It was also noted on one of my blood tests my IgM was below the normal range and my GP didn't know why.

Is it possible that I might just not be making enough coeliac antibodies due to deficincies? Or would I need to have very severe deficeiences for this to be possible? Maybe this isn't likely however as i've had other antibody tests which were positive (hashimotos, anti-mitochondrial) or are the production of some antibody types more severly impacted by deficiencies than others?

Thanks!