The Blood Test/ Confirmation Of Diagnosis

[AshleyBriana]

Hello everyone! I am new to the board and new to the idea of having Celiac's. Any information anyone can provide about my question would be greatly appreciated.

The last 2 years I have developed the following symptoms/ conditions:

-Severe anemia (doctors can't explain why)

-Hairloss and not growing back (The scalp feels like it is inflammed. It will hurt my roots, if that makes sense. If I move the hair it starts to fall out. The thinning hair isn't growing back.)

-Severe chronic insomnia. No sleeping meds keep me asleep. Sleep is much worse if I consume gluten that day.

-Very pale skin (Doctors attributed it to the anemia.)

-Polycystic Ovarian Disease.

-Low B12

-Unexplained pins and needles in my left hand.

-Migraines.

-Easy bruising.

-Immediate reaction to gluten and dairy that only has become worse over time. I get VERY bloated and sick to my stomach. I'll spend an hour in the bathroom after eating gluten. Dairy just makes me really bloated. I cut out both this past week, not thinking of hidden gluten, and was still getting sick off of meats that were not gluten free. Now I am more knowledgeable.

So originally my doctors all treated the above sypmtoms as separate problems. I started going to a new doctor and he said at the very least I have a severe gluten allergy. He also suggested being tested for Celiacs. I got the paperwork and went to the local lab where I was told the testing was $120 because OHIP doesn't cover it!! Now I just don't have the funds to put towards the test right now.

My question is:

How important is the test and what does the information do for me in terms of treatment. The doctor already said absolutely no gluten for me. I've already started to swap out shampoos, soaps, etc for gluten free and I am only buying gluten free foods. Will the test give us any more important information? I would hate to spend the money to just get a confirmation and nothing else. If it is really important then of course I will make sure to find the funds from somewhere. All my "extra" money right now is just going into switching my lifestyle over, which I think is the most important thing (And very expensive!!).

Any advice anyone can give me would be greatly appreciated.

[Takala]

The testing needs to be done while you are still on gluten, and potentially producing the antibodies to the protein. Once off of it for a while, the reaction is lessened.

That said, there is no guarantee you would test positive.

For how important is the test in terms of treatment:

1. Some people get a few months or even longer into the diet, still feel lousy because they have other issues, or they aren't eating it strictly enough, and they then come back here with all sorts of excuses as to why they don't really have celiac, and that they are going to start eating gluten again, just for the test to make sure. Then they don't resume eating it long enough for enough damage to commence, then they get tested, the test comes back negative, the doctor announces they don't have gluten intolerance nor celiac, and then they eat gluten and feel miserable. Lather, rinse, repeat.

2. Some doctors in your future may give you grief over not having a formal diagnosis. Some health insurance, in the future, may give you grief if the doctors order tests or treatments for what disease you do not officially have, but there is no way to know for sure how that is going to play out. Since your doctor already said absolutely no gluten for you, you may be able to at least be medically acknowledged as a gluten intolerant/non celiac, irregardless of what you really are.

If you have a doctor which is sort of on to this "celiac symptoms thing," you may want to try to cooperate with him/her and humor them with the initial testing. Also, the blood tests vary, there is one test right now that is considered more likely to be accurate. Can you list what tests were ordered ?

You said you have the really pale skin... I am guessing that if you get a gene test (you can do this over the counter) you will be a carrier of one or more of the genes which are most associated with celiac.

[AshleyBriana]

The testing needs to be done while you are still on gluten, and potentially producing the antibodies to the protein. Once off of it for a while, the reaction is lessened.

That said, there is no guarantee you would test positive.

For how important is the test in terms of treatment:

1. Some people get a few months or even longer into the diet, still feel lousy because they have other issues, or they aren't eating it strictly enough, and they then come back here with all sorts of excuses as to why they don't really have celiac, and that they are going to start eating gluten again, just for the test to make sure. Then they don't resume eating it long enough for enough damage to commence, then they get tested, the test comes back negative, the doctor announces they don't have gluten intolerance nor celiac, and then they eat gluten and feel miserable. Lather, rinse, repeat.

2. Some doctors in your future may give you grief over not having a formal diagnosis. Some health insurance, in the future, may give you grief if the doctors order tests or treatments for what disease you do not officially have, but there is no way to know for sure how that is going to play out. Since your doctor already said absolutely no gluten for you, you may be able to at least be medically acknowledged as a gluten intolerant/non celiac, irregardless of what you really are.

If you have a doctor which is sort of on to this "celiac symptoms thing," you may want to try to cooperate with him/her and humor them with the initial testing. Also, the blood tests vary, there is one test right now that is considered more likely to be accurate. Can you list what tests were ordered ?

You said you have the really pale skin... I am guessing that if you get a gene test (you can do this over the counter) you will be a carrier of one or more of the genes which are most associated with celiac.

Thank you for getting back to me!

He ordered:

Anti-Tissue Transglutaminase and Anti-Endomysial Antibodies

I haven't had gluten in about 5 days. Should the test still be valid?

Thank you again. I really appreciate you taking the time to help me!

[kittty]

Hair loss is one of the major symptoms of PCOS. Are you getting treating for the PCOS as well as seeking answers for the gluten-related issues? I'm not sure if the two disorders are related or not.

[AshleyBriana]

Hair loss is one of the major symptoms of PCOS. Are you getting treating for the PCOS as well as seeking answers for the gluten-related issues? I'm not sure if the two disorders are related or not.

Thank you for the reply.

I have an appointment with an endocrinologist next week. It was a 5 month wait to get in. The doctor stumbled on that diagnosis trying to find a root cause of the insomnia! Hopefully the specialist will be able to help me out.

[Takala]

PCOS is associated with celiac. So is insulin resistance. Getting the diet adjusted can make a difference in symptoms. Treatments for PCOS can be harsh because they use hormones.

Test should still be valid after only 5 days, but if there's more coming, you may want to not go all the way off yet. Try to get an IGA test, if they have not done so, to make sure that is normal, because if you are low IGA, then that can throw the other tests off as false positives.

RUN, don't walk, if the endo doc doesn't know that celiac's linked to many cases of PCOS. If he/she is not a dud, get the endo doc to test you for thyroid antibodies not just the thyroid hormone levels.

Celiac/gluten intolerance can also cause hair loss, which can be reversed with a gluten free diet. Thyroid problems (auto immune thyroid disease linked with celiac) can also cause hair loss.

[frieze]

Thank you for the reply.

I have an appointment with an endocrinologist next week. It was a 5 month wait to get in. The doctor stumbled on that diagnosis trying to find a root cause of the insomnia! Hopefully the specialist will be able to help me out.

See if you can get the endo to order lab work ahead of the visit, and roll the celiac testing in with that, should be able to save an accession fee. yup, it appears that PCOS may be 2' to celiac/carbohydrated digestion issues. I would bet the sleep meds aren't working because your gut is sooo messed up, you are not absorbing it. I am not sure but i think hair loss can be related to anemia as well. good luck.

[rosetapper23]

Though there are some members on this forum who will disagree with me, I see very little reason to have any tests done. Your symptoms are HIGHLY suggestive of celiac, and since your doctor has prescribed a gluten-free diet, what's the point in getting tested? It sounds as though you need to follow a gluten-free diet NOW and not later. Personally, I feel that one's health should take precedence over bureacracy.

Regarding your hairloss, yes, it may be caused by an endocrine problem, but you might also be suffering from deficiencies of B vitamins, manganese, zinc, and/or silicon. If you decide to take these supplements, Country Life sells an excellent Co-Enzymatic Vitamin B Complex. Also, you should try to find the chelated forms of manganese and zinc, and a good silicon product is BioSil. If malnutrition is the reason for the hairloss, you'll begin to see new hair growing in around your hairline in about 3-4 weeks. Some of us also see improvement with collagen (NeoCell is a good product and is inexpensive--simply throw it in a smoothie).

[bartfull]

RoseTapper, I'm one of those who disagrees with you about testing. I don't have insurance so I'VE never been tested either, but when I read here about folks who go for followup tests a year after going gluten-free and find they are still producing antibodies, it makes me wish I COULD have been tested. Some of those folks feel fine after going gluten-free. Their symptoms have disapeared, but they are still doing damage to their guts somehow. I personally wish I could get tested just so I would know for sure that I am truly healing.

I will admit though, that if I got insurance now and could afford testing, I don't think I could start eating gluten again for weeks so the tests would be accurate. After that last glutening I got just from cross contamination I was so sick, I know I couldn't handle it.

[rosetapper23]

Bartfull,

That is why I advocate not testing in such cases--it's advisable to test if a person has been eating gluten, but to require a person who is extremely ill to continue to eat gluten simply to prove a diagnosis makes no sense to me. A person's health is the most important thing!

Each case is different....but I will NOT advocate that a person poison him/herself to prove anything. There are celiac experts who back me up on this....but, again, each case needs to be evaluated on its own merit.

[AshleyBriana]

I just want to thank each and every one of you for all the information! I have learned so much already and I have this forum to thank for that.

We are going to put the test on credit today. I have been gluten free for the past 5 days (food wise.. I am now just learning about skin care, hair care, makeup, kitchen utensils... Etc) and refuse to add it back in for a test. Last night I actually slept half decent for the first time in over a year (The first time I woke up was 6 am!!! I can't even remember the last time I could say that!!)!! That alone is confirmation enough to me even if the test comes back as a false negative because I cut out gluten this week.

Again I want to thank each of you. Not only for your posts on my thread but in every other thread. The list of information on this site is amazing. It feels good to know that all this time, when doctors told me I was "just stressed" which was causing certain symptoms.. Or the symptoms had no cause, that I was right to fight for my health all this time.

Thank you again!