Frustrated

[Pokey Oaks]

So I've decided to get a second opinion. I'm completely frustrated and have been on the edge of tears for weeks...and I'm not usually a crier! I'm just sick of feeling sick!

My bloods so far:

IgA and IgG both <1

TSH 2.2

Ferritin 11

Iron 7

ALP 109 (slightly elevated)

Vitamin D 21

MCH 26.5 (slightly decreased)

My doctors diagnosis- I don't eat a balanced enough diet, I'm not in the sun enough and I probably have a fatty liver, hence the elevated ALP. She doesn't take into account that I've had chronic low iron/ferritin and vitamin d for well over 10 years despite the fact I spend plenty of time outdoors and eat quite well, and that I've had a "funny tummy" for about that long. My sister is the same, and she's been anemic for as long as I can remember. It's been suggested by someone else I have the gene test, but my doctor said it's not necessary because IgG and IgA show a negative result. Meanwhile, I'm still eating gluten until I get proper tests done, and feel awful. Like really awful. I wish I hadn't gone gluten free for 6 weeks, because I feel worse than ever now I'm eating it again.

I'm sorry for the rant, I'm just so over being treated like an idiot. It's not like I WANT Celiacs, I want to feel better.

[nvsmom]

It's been suggested by someone else I have the gene test, but my doctor said it's not necessary because IgG and IgA show a negative result. Meanwhile, I'm still eating gluten until I get proper tests done, and feel awful. Like really awful. I wish I hadn't gone gluten free for 6 weeks, because I feel worse than ever now I'm eating it again.

 

Which IgA and IgG tests were done? If it's just a serum IgA and IgG, those are not celiac tests. They are tests to check on immune function.  Was it the tissue transglutiminase tests? That's what docs usually start with. These are the most common celiac tests:

 

tTG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - newer tests which appear to be good at detecting early celiac disease or when not much gluten is being consumed (sometimes)

EMA IgA - tends to be positive in advanced cases of celiac disease

total serum IgA - a control test to determine if you have enough IgA for accurate IgA based celiac tests; 5% of celiacs do not

AGA IgA and AGA IgG - these are older and less reliable tests

 

Open Original Shared Linkhas more info on the tests on pages 10-13.

 

I'm glad you are eating gluten. Many people don't realize it's needed for accurate testing.... I'm sorry you are feeling so poorly though.  Perhaps try eating gluten in the evenings only so your days aren't as affected.

 

If the tests are negative, or you can't complete the gluten challenge, go gluten-free anyways. It looks like at the very least you have non-celiac gluten intolerance (NCGI) which causes all the same symptoms as celiac disease except the damaged villi or dh rash.. There are no tests to diagnose NCGI; some doctors think the AGA can be positive in some with NCGI but it's not a very reliable test.  Doing well on the gluten-free diet is considered diagnostic.

 

Good luck!

[Pokey Oaks]

The tests as written on the results are:

Deamidated Gliadin (EIA): <1 (RR<20)

H-Transglutaminase IgA recomb Ab (EIA): <1 (RR<4)

I'm not which ones these are exactly? I had also only been eating gluten for 3-4 weeks before the bloods were taken, and had been gluten-free 6 weeks prior.

With the above tests, and having eaten gluten for that period of time, would you say it's unlikely to be celiac? If that's the case, I think I need to see a specialist, I can't keep feeling this way, I need to know what's going on.

It'd also be nice not to constantly feel tired and lightheaded, which I am assuming is due to my lack of iron. Though I have always had trouble with low blood pressure.

I don't know, I'm just frustrated and want to feel "normal".

[NoGlutenCooties]

Keep in mind that there is also non-Celiac gluten intolerance.  The blood work and biopsy will be negative but you get to experience a lot of the other symptoms.  There's no test for NCGI other than going gluten free and seeing if your symptoms go away.  Then if your symptoms come back when you reintroduce gluten and go away again when you go gluten free again then you know it's NCGI (or at least gluten sensitivity).

[124chicksinger]

I am new to this gluten free. Recently scoped and blood tested negative for celiac.  My underlying could-be-related-to gluten health conditions, plus my symptoms and gastrointestinal and bowel habits lead me to believe gluten IS my issue.  That written, I am doing a trial elimination of gluten and already my bowel habits have changed/improved.   

 

Having gone gluten free yourself for six weeks, how did you feel with it absent from your diet?  

 

Perhaps you could insist your doctor do the gene test, but even if that is positive, it means you could possibly develop celiac disease, if you don't have it now.  The disease consists of the obvious symptoms, plus the damaged small intestines, or/and the HD rash, and positive blood tests.  So perhaps you don't have damage or antibodies - yet - but are gluten intolerant/sensitive.  The only way to know is by eliminating the gluten.  

 

You are eating gluten now, I'm assuming so you can get proper testing, but the testing may only disappoint you.

 

If you are making "good" "healthy" food choices when gluten free, you should see symptoms improve.

 

On the one hand, I am glad to know I do not have celiac disease; on the other hand, I am on my own gluten-free journey to see if there is a connection.  I read somewhere, likely on this forum in someone's signature, you don't need a doctor's approval to eliminate gluten/change your diet.   You may never get satisfaction from your doctor or the tests that are available at present.  That is something you may have to reconcile and decide to continue with your current diet, or return to gluten elimination.

[Pokey Oaks]

The 6 weeks I was gluten-free, I felt amazing. I react even more so now, since I resumed eating gluten, than I ever have.

Does non-celiac gluten intolerance also cause vitamin/mineral deficiencies? If the villi is normal, would that make absorption ok?

[124chicksinger]

I can't imagine that damaged villi are the only reason for malnutrition or malabsorption or low levels of vitamins, etc.  I totally understand your frustration - I fully expected my tests to come back positive for celiac based on my underlying conditions and symptoms and health history, but I'm relieved not to have the antibodies and the damaged intestines.  Still, I'm not convinced gluten isn't responsible for my ills either, and the only way to know is to eliminate it.  

 

I don't know if I'd pursue further celiac testing. Genetic testing isn't likely going to give you an "aha" moment, and it means only you have potential to develop celiac disease, not that you did or will.  However, you already know that eliminating gluten made you feel better, and you don't need further testing to prove that.

 

Perhaps going to an allergist and having a scratch test of food allergens would be helpful?  Perhaps you are eating some things that cause inflammation or reaction?  I did this at the same time of the celiac testing and tested positive for oats and barley, though not wheat.  Since barley and often oats have gluten in common with the wheat, and I had been eating a lot of oatmeal, on the advice of a diabetic nutritionist, for years, and barley in soups, it gave me more reason to avoid all of the gluten grains.  Also tested allergic to rice - now only eat a half cup when I eat it; perhaps eventually I'll eliminate it too.

 

Hope this helps.  Don't feel badly that you don't have a definite celiac diagnosis, but as to gluten, feel free to eliminate it without anyone's permission.

[w8in4dave]

I tell ya! I am so sick of Drs! Them and their not believing their patients. I mean really do they think we are lying when we say we have to run to the restroom every time we eat? And how painful our guts feel before we go? Or the rashes and the skin and nails and hair falling out! What eles has to happen before they decide well maby it's Celiac? OR Gluten intolerant . What eles do they want you to go thru? 

Whats wrong with them just doing a test?  I'm sorry I'm ranting about Drs. They tick me off! I'd just go gluten-free really! If you feel that much better after you went gluten-free. Do it! But make sure you tell your Dr. So you can rub it in when you feel better! He'll wonder why your numbers look so much better and you can say ohh yea I went Gluten Free He will say well something is working for you! Good luck! Sorry for the rant! I want you to feel better! 

[Pokey Oaks]

Thank you for your response. I know a positive gene test doesn't mean positive for Celiacs, but the benefit for me is that if it's negative, it's something I don't have to worry about for myself, or possibly my kids.

My father (recently deceased due to sudden massive stroke) and sister also have a history of discomfort with certain foods, and I have at least one child with a diagnosed behavioral disorder, and one with lactose intolerance. IF the gene test were to come up positive, it gives myself, and my family members a 'springboard' to go off for any present or future issues...if that makes sense. I'm

Just frustrated that my doctor doesn't see this benefit, and won't give me any other reason as to why I'm constantly lacking in key minerals, I eat plenty of vegetables and red meat. I want to know exactly what is going in with my body, and I don't think that's unreasonable.

For me it's now or never; if I go gluten free again, I'm never going back. I won't be doing any gluten challenges. If I'm going to be diagnosed, it needs to be now. I can't go through this again. It's incredibly depressing.

[nvsmom]

I had a response typed out and then the iPad died... Darn. Lol

Anyway, it looks like you had the tTG IgA and DGP IgA run. Both good tests. Did you have the serum IgA test run? If you are low in IgA, those tests will be invalid.

I am not confident that your 3 week gluten challenge was enough. Most doctors not want you to complete a 2-3 month gluten challenge so the tests will be accurate... You may have needed longer for accurate testing, so you could have celiac disease.

Either way, NCGI and celiac disease both have the same treatment - the gluten-free diet. It sounds like you have one or the other if you felt better gluten-free.

As for your family, could they have the celiac panel run instead of the genetic tests? The dq2 and dq8 genes just mean one has a greater chance of having or developing celiac disease than other people BUT those genes are not needed to develop celiac disease; we have a few board members who had negative genetic tests yet still tested positive for the disease.

If your kids test negative but still eat gluten, they should be retested every few years. You might want to consider the gluten-free diet for them too. They could also have NCGI, which feels just as horrible as celiac disease - as you already know - so they may be healthier if they go gluten-free. Just make sure you give the diet a few months as some symptoms take a long time to improve.

Best wishes.

[Pokey Oaks]

I've been thinking about it all day, and I'm just going to go gluten free again. Was 3-4 weeks of gluten enough? I don't know, but I've definitely decided I can feel like this anymore, so I'm changing my diet back to gluten-free from now. My stomach churning all day has helped make that decision.

As for my family, I'll be putting my children on a gluten-free diet too to see if that helps behaviour.

There is no way my family will accommodate my gluten-free without a celiac diagnosis, so I'm not going to be able to visit them for dinner. They'll just see me as a hypochondriac as my doctor obviously does. Even my aunt (not blood related) who is celiac cringed at the suggestion of non celiac gluten sensitivity...and she herself is a doctor.

As for my low iron, vitamin d, and quite often low potassium and sodium...I guess that's just a freak of nature, and I'll have to put up with it. Same with the elevated ALP, I guess my liver didn't get the memo that there's nothing wrong with me.

No other Celiac test were done other than the above ones. No serum IgA, but it's all irrelevant now anyway.

[frieze]

• actually, you could get the IgA run.   if it is low that would explain you lack of positivity on the other blood tests..

[SkyBlue4]

 

• actually, you could get the IgA run.   if it is low that would explain you lack of positivity on the other blood tests..

 

 

I was thinking the same. The IgA tests in the celiac panel would not be accurate if your total IgA is low or deficient. 

[cyclinglady]

If you are going gluten-free, then start supplementing with gluten-free vitamins, etc. for the next three to six months. As you heal, you should start absorbing iron, vit, D etc. Get re-tested as too much iron is just as bad as too little.

I was formally diagnosed last year, but my husband has been gluten-free for 13 years at the advice of my allergist and his GP. He feels great but says I have it much easier in terms of family and medical support. Plus, our doc did not even blink when I asked for my daughter to be tested.

Good luck!

[nvsmom]

If possible, get the kids tested before they go gluten-free. Having a firm diagnosis can sometimes make accommodations at school a bit easier to get.... In theory and on aperture anyways. Lol

Good luck with the diet. I hope you feel well soon.

[NoGlutenCooties]

Does non-celiac gluten intolerance also cause vitamin/mineral deficiencies? If the villi is normal, would that make absorption ok?

 

I don't honestly know exactly how that works - hopefully someone more knowledgable about NCGI can chime in here.  However, as most of the symptoms and related ailments are thought to be connected to malabsorption issues, and NCGI folks can get many if not all of the same symptoms as Celiac folks... I'm thinking it's more than just villi damage that's going on.  (meaning it's more than just the villi damage that is causing malabsorption issues and symptoms, etc)

[nvsmom]

I think deficiencies often have to with inflammation and luck. I am a celiac, and was undiagnosed for close to 40 years yet I was not deficient in anything, yet I was low normal in a couple of things though.

Those with NCGI do end up with nutritional deficiencies too.