Do I Have Celiac And Best Test

[WhatsTheDealiac]

Awesome information.

I think I will go the testing route.

How do you know it is a gluten sensitivity vs celiac disease? What are the defining factors?

If it is a gluten sensitivity, what do you do to manage it? Is a gluten sensitivity basically a less severe reaction to gluten?

[trents]

28 minutes ago, WhatsTheDealiac said:

Awesome information.

I think I will go the testing route.

How do you know it is a gluten sensitivity vs celiac disease? What are the defining factors?

If it is a gluten sensitivity, what do you do to manage it? Is a gluten sensitivity basically a less severe reaction to gluten?

There is no test for NCGS (Non Celiac Gluten Sensitivity) and it shares many of the same symptoms with celiac disease. You must first get tested to rule out celiac disease. Some experts consider NCGS to be a possible precursor to celiac disease. We know much more about celiac disease than we do about NCGS and the exact immunes system pathway engaged by NCGS is a bit of mystery at this point I think. The defining factor is that NCGS does not damage the villi of the small bowel like celiac disease does. I would not say that NCGS is just a "less severe reaction to gluten" than celiac disease is. That might be true for a lot of people but because NCGS, if unaddressed by going gluten-free, can cause damage to non enteric body systems I would not say it is less serious than celiac disease but that it just has a different mechanism. One category of system damage we see reported on this forum by those with NCGS that was undiagnosed for years is neurological deficits.

So, a diagnosis of NCGS would entail celiac-like symptoms when gluten is consumed after having celiac disease ruled out and the inverse of that, namely, negative results for celiac testing combined with the improvement of symptoms when gluten is withdrawn. The management of NCGS is the same as it is for celiac disease, complete elimination of gluten intake for life.

[WhatsTheDealiac]

8 hours ago, trents said:

There is no test for NCGS (Non Celiac Gluten Sensitivity) and it shares many of the same symptoms with celiac disease. You must first get tested to rule out celiac disease. Some experts consider NCGS to be a possible precursor to celiac disease. We know much more about celiac disease than we do about NCGS and the exact immunes system pathway engaged by NCGS is a bit of mystery at this point I think. The defining factor is that NCGS does not damage the villi of the small bowel like celiac disease does. I would not say that NCGS is just a "less severe reaction to gluten" than celiac disease is. That might be true for a lot of people but because NCGS, if unaddressed by going gluten-free, can cause damage to non enteric body systems I would not say it is less serious than celiac disease but that it just has a different mechanism. One category of system damage we see reported on this forum by those with NCGS that was undiagnosed for years is neurological deficits.

So, a diagnosis of NCGS would entail celiac-like symptoms when gluten is consumed after having celiac disease ruled out and the inverse of that, namely, negative results for celiac testing combined with the improvement of symptoms when gluten is withdrawn. The management of NCGS is the same as it is for celiac disease, complete elimination of gluten intake for life.

Great info. Thanks for taking the time to write all that. I learned quite a bit.

I want to note that since I went back on gluten, everything is bad, again. The stomach cramps, diarrhea, bad itchiness around the anus, etc 

As far as the neurological issues go, are those usually completely healed after a long period of no gluten, or not? My concern is that I have had this for 15 years with no control. I am concerned about my memory and neuropathy.

I am also concerned about my circulatory system, as my diet has been bad a lot of that time, with many periods of that 15 years missing exercise. I have even seen my diastolic in the upper 40s in the past, which I thought was a sign of atherosclerosis.

I guess what I’m getting at is, I’m hoping I don’t have the innards of what a typical 60 or 70 year old would have, when I’m in my 30s…

 

[trents]

"As far as the neurological issues go, are those usually completely healed after a long period of no gluten, or not?"

Not necessarily. Sometimes there is complete healing but often there is improvement but not complete healing. With neurological problems it is very important to include gluten-free high potency B-complex, generous amounts of D3 (up to 10k IU daily) and Magnesium. Much of the collateral damage caused by celiac disease is tied to nutritional deficiencies. The damaged SB villi become much less efficient in absorbing nutrients from our food.

[WhatsTheDealiac]

Awesome info.

Should I be taking those during my gluten ingestion period?

Any specific product you  could point me to during this time?

Is there a guide or post that talks about all the vitamins you should be taking, or a product that provides most of what you need?

[trents]

Yes, you should be taking those vitamin/mineral supplements during your gluten ingestion period. They will not affect celiac disease testing.

My personal recommendation would be to look at Costco Nature Made and Kirkland vitamins and supplements. Most of them are gluten free and will clearly say so in the labeling.

I use:

1. Kirkland Mature Adult Multi Vitamin 1xdaily

2. Kirkland Super B-Complex 1xdaily

3. 21st Century B-12  2500 mcg. sublingual (Amazon) 1xdaily

4. Kirkland D3 50mcg (2000 IU) x2 daily

5. Nutricost (Amazon) Zinc Picolinate 1 cap every other day

6. Doctor's Best High Absorption Chelated Magnesium 100mg x2 daily (Amazon)

7. Choline L-Bitartrate (from Bulk Supplements purchased on Amazon) 1tsp x 2 daily

 

It's important to get a highly absorbable form of Magnesium (such as Mag Citrate or Mag Gluconate). Otherwise, it may have a strong laxative effect (like Milk of Magnesia) and to start with a low dose and titrate up until you realize you're pooping too much.

 

[plumbago]

My own experience-- I always verify I am low in a vitamin or mineral before taking supplements.

[WhatsTheDealiac]

Great info.

That gives me a great foundation for starting vitamins.

Plumbago, how do you know which vitamins you need? Couldn’t you get much variance in results, based off whatever your current diet is, or how much you are exercising?

[WhatsTheDealiac]

Also, why do a lot of vitamins give you way more than 100 percent of DV?

Why are Vitamin B 12s extremely high above 100 percent DV?

Vitamins aren’t just for people with Celiac who have issues with absorption, so that further muddies things. 

[trents]

29 minutes ago, WhatsTheDealiac said:

Also, why do a lot of vitamins give you way more than 100 percent of DV?

Why are Vitamin B 12s extremely high above 100 percent DV?

Vitamins aren’t just for people with Celiac who have issues with absorption, so that further muddies things. 

MDR = minimum daily requirement. Those percentages on the vitamin bottle labels are based on this. But minimum should not be understood to mean adequate or optimal. MDR numbers basically are them minimum thought to prevent obvious deficiency diseases such as scurvy and pellagra and beriberi. 

[plumbago]

I test a lot. And before I purchased and ordered my own blood tests - which anyone can do, for a price (I believe we've covered this in this thread) - my doctor would test me. My primary care doctor thought I should be taking B12 even though I was in the normal range. She thought I was low normal and wanted me on it. So really, from all I've been able to learn so far, supplementing with B12 is virtually risk free even if you are at high normal. So I continue to take it sublingual. I test myself for Vitamin D, but I am also someone who lately has questioned the need for supplementation in general and D3 supplementation in particular, and have posted on it on a separate topic. You should without a doubt listen to a doctor you trust. Get tested. If you have Celiac, there's a very good chance you are deficient in some vitamins and minerals.

[WhatsTheDealiac]

Thanks, everyone. I can’t believe it’s already been almost 2 months since I joined and created this thread.

I have not forgotten about you, or took any info for granted. I did my 6 to 8 weeks of gluten consumption, ordered my ImAware test, and they received it back from me on October 19th. I am awaiting the results, which they said I would receive within 10 days of their reception. I will update when I hear back. Thanks. 

[WhatsTheDealiac]

They told me the results will be in tomorrow, or Monday.

Is it worth it to order an inflammation test to see how much inflammation I have, before stopping gluten?

Thanks. 

[trents]

If you don't plan on getting an endoscopy/biopsy for confirmation of celiac disease (or as a further diagnostic step if the imaware antibody tests are inconclusive) then you can start the gluten-free diet any time. If you are entertaining the idea of further testing then hold off. It is a good idea to repeat antibody testing in 6 months or a year to see if you are being successful in avoiding gluten.

[WhatsTheDealiac]

Thanks, everyone.

I have my results. I tried to attach them, but the picture was too bag, so I will post numbers.

tTg-IgA 1.7 U/mL

tTg-IgG 3.3 U/mL

DGP-IgA 4.1 U/mL

DGP-IgG 6 U/mL

I want to preface this post by mentioning that my sister got a food sensitivity test by EverlyWell, where they rate you on a 1,2, or 3 scale for severity of sensitivity to each food they test for. She received a 2 for gluten.

It appears that I don’t have Celiac Disease?

I really thought this would come back as probable for Celiac Disease, with all the problems I have had, but alas, it did not. I did not restrict my gluten intake, whatsoever, before testing.

How many people get dermatitis herpetiformus without Celiac Disease? Can gluten sensitivity cause that? What about the mental manifestations? Can that be caused by gluten sensitivity? 

I’m going to make another thread for this post, so everyone can see and learn from it, too. Thanks, everyone. 

[trents]

WhatstheDealiac, you posted no reference ranges with the test result so we can't say much about the results until you do. Every lab uses different reference ranges. There is no standard. You only have a short time windows to edit a post so you'll have to post all those numbers again along with the reference ranges.

If you have DH you have celiac disease. There is no other known cause for DH. A small percentage of celiacs have DH but not villi damage to the small bowel and so no positives for the antibody tests. Have you gotten a skin biopsy of the rash during an active outbreak? Are you certain it's DH?

[WhatsTheDealiac]

tTg-IgA 1.7 U/mL Above 5.4 is abnormal

tTg-IgG 3.3 U/mL Above 6.4 is abnormal

DGP-IgA 4.1 U/mL Above 14.7 is abnormal

DGP-IgG 6 U/mL Above 10.5 is abnormal

I don’t understand how the references could be different from different companies? I would think that if it was above a certain amount, you would have Celiac, no matter where it was done?

I haven’t had a biopsy done, but the rash is bumpy, itchy, and looks like some of the pictures I have found for DH. It happened in the same time frame that I got a bumpy rash on the undersides of my arms, and also getting loose stools that is causing the worst anal itch in the world, accompanied by anal bleeding.

[trents]

Just to make sure, I'll ask this question: Were you eating regular amounts of gluten (2 slices of wheat bread or the gluten equivalent) most days in the two months leading up to the antibody testing? If so, there is no indication from the test numbers that you have celiac disease. You could be one the small percentages of people with celiac disease that have DH but not villi damage or your rash isn't DH and you may possibly have NCGS, SIBO (Small Intestinal Bacterial Overgrowth), IBS or some other bowel malady.

The next logical step would be to get a skin biopsy done during an active outbreak of the rash to confirm or disprove DH. Fin a derm doctor who is familiar with DH and know how to take the biopsy properly. The biopsy should not be taken from the blisters themselves but next to them.

The other approach would be to begin the gluten-free diet now in earnest and see if symptoms improve. As has been said, celiac disease and NCGS share many of the same symptoms and the antidote is the same for both, life long total avoidance of gluten.

[WhatsTheDealiac]

7 minutes ago, trents said:

Just to make sure, I'll ask this question: Were you eating regular amounts of gluten (2 slices of wheat bread or the gluten equivalent) most days in the two months leading up to the antibody testing? If so, there is no indication from the test numbers that you have celiac disease. You could be one the small percentages of people with celiac disease that have DH but not villi damage or your rash isn't DH and you may possibly have NCGS, SIBO (Small Intestinal Bacterial Overgrowth), IBS or some other bowel malady.

The next logical step would be to get a skin biopsy done during an active outbreak of the rash to confirm or disprove DH. Fin a derm doctor who is familiar with DH and know how to take the biopsy properly. The biopsy should not be taken from the blisters themselves but next to them.

The other approach would be to begin the gluten-free diet now in earnest and see if symptoms improve. As has been said, celiac disease and NCGS share many of the same symptoms and the antidote is the same for both, life long total avoidance of gluten.

Thanks for the response. I’m not sure what the equivalent is to two pieces of wheat toast. How do you measure gluten? I just ate multiple things with gluten each day, like fig bars, pizza, pasta, etc. I had pizza and fried chicken strips the other day, and that caused explosive diarrhea and stomach pain, soon after the chicken strips. I had pizza for lunch, and chicken strips for dinner.

Here is one image of my leg. I hope you can see it ok. It starts on the upper left side of my right knee, and goes down to the lower left part  

https://ibb.co/tLFz7zk

 

 

[trents]

Sounds like you were in fact eating enough gluten to generate valid tests results.

I don't have DH and so I'm not that familiar with what it looks like but there may be other skin diseases that look a lot like it. You need to get a biopsy from a dermatologist to confirm.

[WhatsTheDealiac]

5 hours ago, trents said:

Sounds like you were in fact eating enough gluten to generate valid tests results.

I don't have DH and so I'm not that familiar with what it looks like but there may be other skin diseases that look a lot like it. You need to get a biopsy from a dermatologist to confirm.

Thanks.

If Celiac was causing all those stomach and excrement issues, wouldn’t it have damaged the villi at some point, since I have had the stomach issues for probably 20 years?

[WhatsTheDealiac]

I also noticed that all 4 numbers for my test were at the absolute bottom of the scale. Does that seem odd to you?

[trents]

30 minutes ago, WhatsTheDealiac said:

Thanks.

If Celiac was causing all those stomach and excrement issues, wouldn’t it have damaged the villi at some point, since I have had the stomach issues for probably 20 years?

Actually, there is a small percentage of celiacs whose only disease expression seems to be DH. Their immune response entirely different locus and their villi are not damaged. Your GI issues could be due to non-celiac issues such as IBS or SIBO (Small Intestine Bacterial Overgrowth), MCAS (Mast Cell Activation Syndrome)/histamine intolerance.

18 minutes ago, WhatsTheDealiac said:

I also noticed that all 4 numbers for my test were at the absolute bottom of the scale. Does that seem odd to you?

Not really. Not if your villi are not being damaged.

[plumbago]

Me in your shoes, @WhatsTheDealiac, I would definitely retest. I quickly looked up the test you took and see it measures blood from a finger stick. I just don't know anything about those tests. So again, me? I'd retest at a lab with peripheral blood. I'd also get a biopsy of your rash, and I'd try to find a celiac specialist near me and try to meet with him or her. Something's going on here. I feel like you could have done many of those same tests with peripheral blood (from your arm) for nearly the same price you paid for the finger stick.

Edited October 29, 2022 by plumbago
clarification

[WhatsTheDealiac]

Thanks, everyone. I’m mulling over my next move.

I took another picture of, what I believe to be, DH. Can anyone weigh in on if it looks like DH to him or her?

https://ibb.co/hfMvMpj