Looking For Opinions

[Eclara]

Hello! I have a gastroenterology appointment set up, but I can't get in for another month and a half so I guess I'm just impatient and looking for some advice and support while I wait. I'm a twenty year old girl of average weight. I have had one blood test done two years ago that they said was negative, although it wasn't the full celiac panel. I have been mostly gluten-free for about a year now, and I had done it off and on in the year before. Although I don't eat glutinous bread or pasta (etc.) and I avoid a large list of gluten ingredients, I eat oats and a few other questionable things that are not marked gluten-free, my supplements and medications are most likely not gluten-free, and I share cookware with a whole house of gluten-lovers. I have been diagnosed with:

- Asthma

- Hypothyroidism

- Rosacea

- Vulvodynia

- IBS

- Several vitamin deficiencies

- Depression

- Insomnia

- Generalized and Social Anxiety Disorders

Symptom-wise, I also struggle with:

- Recurrent sinus, gum, and toenail infections (also suffered from recurrent tonsillitis as a child until I had surgery to take them out)

- Recurrent costochondritis

- Severe fatigue

- Constipation

- Some bloating

- Stabbing/cramping stomach pains (usually either just under the ribs or below the belly button)

- Crippling brain fog (of the depersonalization/derealization, poor memory/concentration persuasion)

- Ridiculously easy bruising and scarring

- Swinging back and forth between having no appetite (usually due to a sour stomach) for weeks and being ravenously hungry all the time

- Popping / painful joints and aching muscles

- Mild acid reflux

- Dark purple under-eye shadows and puffy eyes

- Very dry skin, hair, eyes, etc.

I went gluten-free at about the same time I started taking levothyroxine for my thyroid and stopped binge-eating (about two years ago), so it's hard to say what helped with what, but either way, before making these changes I also had issues with:

- MAJOR hair loss, I'm still attempting to recover from it

- 16 months of missed periods

- Mind-blowingly, incapacitatingly painful stomach spasms

- Binge-eating disorder

- Obesity (I gained 100 pounds, 80 of which were over the course of about 2 months. I have since lost 90 of it)

- Severe gas and constipation (I would go two, sometimes three or four weeks without a bowel movement)

- Bloodshot eyes (to the point of the whites looking yellow)

Since then, I am better than I was but not even close to feeling good. I do feel noticeably worse when I eat gluten and sugar again. I will occasionally (once every 3-5 months or so) slip up and fall back into my old binge-eating habits. I'll spend about a week binging on anything and everything I can find, which includes gluten, sugar, dairy, etc. During that time, all of my symptoms are amplified, especially the brain fog. It gets so bad during Binge Weeks that I always end up seriously questioning whether or not I actually exist because it all feels so wrong.

Over the last year or so, a lot of things have gotten worse. I've developed new food sensitivities including dairy, cane sugar, soy, nightshades, and fructose. I can't go outside when it's sunny out, wear makeup (or even sunscreen), eat certain foods on a list a mile long, or let anyone touch my face because it flares my rosacea so badly. I can't seem to stay on a sleeping schedule, not even a bad one- it gets pushed around, so I sleep from 11pm-7am one day, and two weeks later it's been rotated to 11am-7pm, and then a week later it's back to where it began and the cycle starts again. Exercise is hard for me, in part because of my asthma, but mainly due to stabbing pains I get in my stomach with vigorous activity. I've also gotten more fatigued, to where I am feel-it-in-my-bones exhausted every day.

That's about it, I guess! If anyone has stuck with this novel-sized post, first of all bless your heart and thank you for reading about my woes. Secondly, what is your opinion? Could the small amount of gluten I'm still exposed to be causing this level of sickness? Do you think I am consuming enough gluten to avoid a false negative on a biopsy or blood test? Clearly something is making me sick, but am I looking in the wrong direction completely by considering celiac? Thank you very much for your time!

[MitziG]

I am going to provide you the opportunitty to save a lot of time, pain and frustration.

You are not likely to test positive on any celiac test. It isn't impossible, but it isn't likely.

You either have celiac or gluten intolerance. Your gi will suggest you do a gluten challenge, probably eating a full load of gluten for several months, at which point he will test you. If you have celiacs, you have a 70% chance of getting a positive test.

If you are gluten intolerant, you have a zero % chance of getting a positive test.

Here is what you know- gluten makes you feel bad. So do a bunch of other foods.

Here is what WE know. If gluten makes you feel bad, you are either celiac or gluten intolerant. If you are either of those things than even teeny bits of cross contamination (such as with shared cookware or oats) will make you continue to feel bad. It will also cause you to develop other food intolerances.

Avoiding gluten is not like "cutting back" on other foods. It has to be an all or nothing thing if you want to heal. We can't tell you if you have celiac, but we CAN tell you that with your symptoms and another autoimmune disorder already going on, you are NOT barking up the wrong tree! Gluten is your root issue, whether you have celiac or not. So...your choice now. You can spend the next few months in misery trying to get a test result that proves this (but quite possibly will not) or you can accept the obvious and commit yourself to being 100% gluten free and a few months from now probably be seeing a positive change in your situation. I think we all understand wanting the "validation" of a diagnosis, and there isn't anything wrong with that. But they are hard to come by and you will be subjecting yourself to a lot for that "chance".

[MitziG]

Wanted to add: what WOULD be worthwhile is to get a nutrient panel done- vitamins A, D, E, K, Iron, Ferritin, Calcium, Zinc and Mangnesium. Find out where you are sitting now and begin addressing any deficiencies. Eliminate all sources of gluten, then re-check those levels in 6 months. Also, you should be taking a good probiotic to restore normal gut flora. This will do wonders for regulating things and helping with absorption of any supplements.

[1desperateladysaved]

If it is opinion you want, I being Celiac my self and having experienced some of those sympotmes. I think you have a gluten problem. I think you should completely avoid gluten. I want for you to find out (from the forum perhaps) how to follow the diet completely.

You should be desperate enough to do whatever you have too. Sorry, that you are traveling through this, but glad it seems like you have a major root to your health problems. Now that you know what it is: You can control it.

More questions? Just ask.

Get well, get well, and get well

Diana

[GottaSki]

Wanted to add: what WOULD be worthwhile is to get a nutrient panel done- vitamins A, D, E, K, Iron, Ferritin, Calcium, Zinc and Mangnesium. Find out where you are sitting now and begin addressing any deficiencies. Eliminate all sources of gluten, then re-check those levels in 6 months. Also, you should be taking a good probiotic to restore normal gut flora. This will do wonders for regulating things and helping with absorption of any supplements.

I agree that you should completely remove gluten and watch for more health improvement.

I believe it would be wise to call your primary doctor to order a full celiac panel along with the vitamins/minerals listed above -- add vitamin Bs to the list. If you take all the blood tests now, you will have the data to compare in the future. Get the blood done asap and then tighten down your diet to remove the remaining gluten sources in your life.

It's time to give your body a chance to heal properly. I wish you speedy healing - but do be aware it can take time - write down every positive change you have already experienced by decreasing gluten and continue to add to that list once gluten is removed. Keep it somewhere that you see it often to reinforce the need to stay 100% compliant.

If you find that you can not control the binges - please choose gluten-free items and look for help within the medical community or a support groups for eating disorders.

[Eclara]

Thank you all so much for the helpful responses! I am just about to send a request in for the blood work, and then I'm off to dive into researching a more aggressively gluten-free lifestyle. I have one more question. A few days ago, I had ordered the results of my labs from two years ago to see what my levels actually were, and they arrived in the mail late yesterday. They didn't perform the full celiac panel at the time, but my IGA is listed as being low. I'm not really sure what to make of that, my doctor got really focused on my thyroid and she didn't explain the other results to me. I never really thought to ask afterwards.

IGA - 58 (L)

Tissue Transglutaminase Antibody IgA - <1.0...

What might that indicate? I was under the impression that celiac produced higher levels of IGA, although I guess if it's a gluten intolerance it wouldn't affect the levels.

Thanks again! It's been like a weight lifting off my shoulders to know that there are other people out there who have suffered from the same kinds of problems as me. I can't tell you how much I appreciate your time and sage advice

[GottaSki]

There are several IgA & IgG tests in the full panel. This is the danger of just running the screening of tTG IgA.

In Celiac Disease antibodies to both IgA and IgG are produced in reaction to gluten. If you have very low total IgA, your body is unable to produce IgA Antibodies. This is the reason the Total IgA is run. When it is low, there should be a follow up with a FULL celiac panel that includes IgG testing. From what I read approximately 5% of those with Celiac Disease have low Total IgA and therefore will likely not test positive on any IgA based blood test.

You will may always test negative/normal on the tTG IgA test, you certainly need the full panel.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Good Luck!

edited for better wording...hope this is clear.

[GFinDC]

Hi Eclara,

As you have found out, the celiac testing is not 100% reliable. There are false negatives sometimes. So it makes sense to go ahead and try a strict gluten-free diet for 6 months or so regardless of what the tests say. Your symptoms are severe enough to lead to much worse complications if you don't do something to change your health for the better. Your doctor can't fix celiac disease, only you can make the changes needed. Read the anger thread in the links below. Celiac can affect our brains as well as our guts. It also raises the chance of developing additional autoimmune diseases. Your roseacea could be hermatitis herpetiformis or DH. There is a subforum on the site with more info on DH.

Since celiac can cause depression and other mental symptoms, it is not always easy to think clearly when we are glutened. But that can change with a gluten-free diet and time. The gluten-free diet is not an instant cure, and celiac doesn't go away, but our symptoms can go away. And welcome to the site!

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

Hi Eclara,

Sure sounds like celi ato me. Testing is good but do try the gluten-free diet very strictly for 6 months even if the tests are negative. They are not 100% reliable and false negatives happen.

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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[nvsmom]

The others have given you really good advice. You need to be totally gluten-free, and not just gluten-lite. The last time I had gluten it was a cc (cross contamination) issue, and although the amount I had must have been miniscule I had stomach pain, was bloated for well over a week, had a migraine for days, and then just felt "off" for a couple of weeks. Small amounts can really wreak havoc with us.

I also wanted to add that you should get your thyroid rechecked. It sounds like you could have Hashimoto's hypothyroidism (often linked to celiac) and many of the hypo symptoms are the same as celiac. I have found the fatigue of Hashi's has not been relieved at all by going gluten-free. Not even a tiny bit. Also the dry skin and hair issues, yellow eyes, joint pain and brain fog are all hypothyroid symptoms.

I'm very new to thyroid issues, but I've learned that your TSH should be close to a 1, and if it is close to 1 and you still don't feel better then you should look into adding some T3 to your T4 hormones. I've heard it helps with mental clarity quite a bit (I haven't used it yet because my TSH is still too high).

Also, people who have multiple autoimmune and stress problems, also end up with adrenal fatigue/problems which can really hamper your recovery. It's something else you might want to look into.

Good luck and best wishes with a totally gluten-free diet! I hope you feel better soon.

[Eclara]

I got a message back from my doctor stating that she would order a blood test for celiac, but that it only included the Transglutaminase because that was "the recommended test nowadays." She turned down my request to check vitamin levels unless I can name specific symptoms that would indicate a deficiency in every vitamin or nutrient I want to check. She also declined to retest my thyroid because it was in the "normal" range in May, despite the fact that the levels were elevated from the check in before that. So that's just all kinds of frustrating!

I would have liked to have had a frame of reference, but I guess I'll just have to move forward blindly and judge my progress solely by how I feel.

[pricklypear1971]

You need to find a new doctor.

How are you being treated for the high thyroid test, I assume tsh?

[GottaSki]

You do need to look for a new doctor. I don't often recommend - I advocate working with doctors in partnership. BUT, in this case she does not understand the significance of the low Total IgA AND she is dismissing your list of symptoms - many of the symptoms you listed can be caused by nutrient deficiency.

Most doctors are not educated in nutrition (amazing...sad, but true) and are lucky if Celiac Disease was a footnote in their medical training - my primary doctor whom I love because she doesn't claim to know everything, but is willing to consider all possibilities in my complex case - showed me her little "bible" of notes from medical school...she uses it when she is stumped - it had two sentences about Celiac Disease - both of which are inaccurate.

When I was anemic for decades, the only action was supplementation. I was never tested for another vitamin until 4 years ago. I had almost no Vitamin D - again the answer was supplementation. Only in the dx process with my Celiac Doctor was I ever tested for other vitamins/minerals - ALL of which were extremely low. This is why I advocate vitamin/mineral testing along with full celiac panels -- nutrient testing is essential.

My doctor did not blink when I asked for specific Thyroid blood tests because my TSH has always been "normal" yet my symptoms are very much those of hypothyroid.

To dismiss the need for simple blood tests that could lead to an answer is not acceptable.

[Eclara]

Sorry to bring this thread back to life, but I finally got in to see my doctor face to face. I haven't switched to a new doctor, although I am strongly considering it as I don't feel she listens to me very well. I didn't get any vitamin tests, but I did convince her to retest my thyroid levels, and she's redoing the Tissue Transglutaminase Antibody IgA test. When I brought up my old test results for IgA, she told me it had absolutely nothing to do with celiac and that although the low levels were a concern for a deficiency, she had never heard of an IgA deficiency conflicting with the tests or being prevalent in celiacs. She also said that even the tiniest amount of gluten I was ingesting would absolutely cause a positive if I legitimately had celiac. Now I'm kind of confused because this contradicts everything I've been reading.

Oops, and yes, I am on a generic brand of levothyroxine for my thyroid.

[shadowicewolf]

Please get your gallbladder looked at as well. It can cause some pain (severe) and reflux among other things.

[GottaSki]

she had never heard of an IgA deficiency conflicting with the tests or being prevalent in celiacs. She also said that even the tiniest amount of gluten I was ingesting would absolutely cause a positive if I legitimately had celiac.

She is absolutely wrong on two points - IgA deficiency does conflict with IgA test results just as IgG deficiency would skew IgG test results. The tiniest amount of gluten can absolutely cause a reaction in the body of someone with Celiac Disease, but would not absolutely cause a positive blood result - ESPECIALLY in someone that is IgA deficient. My Celiac Doc quizzed me quite thoroughly before he did the endoscopy to make sure I hadn't even had one day gluten free in the six weeks preceding my endo at the time of dx.

Your doctor has mis-information in her training - period!

From University of Chicago's Celiac Center FAQs:

"For most people, the serum anti-tissue transglutaminase (tTG-IgA) is the best antibody blood test for screening for celiac disease; however, it is important to also get a total serum IgA. Having this total serum test will help bolster the reliability of the tTG test. The reason for this is that while the tTG test is very reliable, its reliability is dependent on the premise that the person being tested adequately produces IgA. If the individual does not produce sufficient amounts of IgA and is instead IgA deficient, then tTG-IgG should be tested instead."

"No, accidental exposure will not show up in a blood test. Repeated exposure elevates antibodies in the blood and causes damage in the small intestine."

Here is the link to their FAQs - there are pages and pages of FAQs but it can be difficult to find particular info. Use the table on the right side of the page to look for general answers or use the search window on the page to look for something specific. I searched "total IgA" and "gluten exposure" for the above quotes - sure there is plenty more info there for you to read thru if you click around.

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