Had Test More Questions

[ToriT]

I will do my BEST to keep this short. I have been sick for several years now and have been bouncing around to different doctors but still have no answers for my physical problems.

I learned about celiacs and found a local doctor who advises our local celiac group. Prior to making the appointment with him I had gone gluten-free on my own for about a month and 1/2. During my gluten-free time I felt so much better! My symptoms were rapidly improving.

The doctor of course wanted me to be tested for celiacs which I said no to at first. But he convinced me to go back on gluten. So I went back on gluten/wheat. My life slowly started to unravel again. The fatigue and slight brain fog returned. My stools were floating again. My thyroid enlarged again. My personality altered again. I felt like a sloth. My adult acne is at a horrible state. Breathing is difficult. Life looks sad again.

I had a colonoscopy and had to fast for 1 1/2 prior to the test. The few days prior to the fasting I ate bland. The day of the colonscopy he took my blood for celiac sprue testing. It came back within NORMAL limits.

Here are my questions (it seems that doctors never call you back with the results - always an office person whom can not answer my questions). BTW His office told me no need to make an appointment until I am 50 years old. Mind you I have the big D all the time and I am very thin, as well as, highly sensitive to rich foods. Lifelong digestive problems.

back to my questions-

1. Could the fast have effected my blood work results?

2. Was eating 1 serving a day of wheat/ gluten for 23 days enough to give me true test results?

3. Would it be wise to get genetic testing to see if I have the markers for celiac?

My plan right now is to get tested for a regular wheat allergy and see another doctor for a second opinion. I am in a state of indescision about whether to stop eating wheat and gluten or to wait for retesting. I know many people go gluten-free regardless of their results but I want answers. I want to know if my son is predisposed to celiacs. I want health insurance to cover dietians if I do have celiac sprue. I WANT to know why my body has been going rapidly down hill for the past 7 years. I want to know why I feel 90 years old when I am only 37!

If it is not celiac sprue causing all these problems then what on earth could it be? Why do doctors seem to blow me off? Why do I feel the need to sit on-line asking these questions to strangers and not my doctors? Since going back on wheat my sadness has reappeared and my worry with a strange mix of paraniod thoughts has also returned. The one thought that is bothering me is that I had a doctor three years ago who accused me of withdrawling from booze. I had switched doctors because all my other one would test for was anemia when I complained of fatigue. This new doctor saw me in one of my very sick states. I had pushed my self through a demanding day of work while feeling very sick and old, unknown to me i would get hand tremors whenever I forced my self to keep going. She thought that meant that I was a drinker and yelled at me. Maybe I am too sensitive but now I think that she wrote that in my records or something and other doctors get that record and then blow me off thinking I am a hypochodiac(sp?) and a drinker. I asked for a copy of my records and the handwritten notes were photocopied poorly and are unreadable. I have this deep mistrust of doctors now yet I have to get better so I must see them. It is such a lonely, yucky feeling.

I am fearful that if I will go gluten-free again and that this time I won't feel better. that the last time was a fluke. But I guess that is my irrational "worry" comming back. At least the people in my life know that my health problems are not in my head. Without them I do not know what I would do. My parents want me to go to the cleaveland clinic which I just dread with my deep mistrust in doctors it seems like a nightmare to go there.

I guess this was not short and simple! Sorry. I rarely unload and it feels easy to do so on-line. It is hard to keep all this bottled up inside yourself.

Thanks

ToriT

[egardner]

I'm new to celiac so I don't have any awesome suggestions, Kaiti is really helpful so hopefully she will be on later to answer your questions. I just wanted you to know that I care about you and you are supported. Sorta like a email hug. Good luck.

[ToriT]

lol thanks! Needed that email hug...

it is a roller coaster ride with testing and feeling ill.

ToriT

[KaitiUSA]

I wish I could have been on earlier but I was gone in VA today for a 6 and a half mile hike at some battlefield...so now I'm playing catch up

If you were gluten free for a month and a half and then only got back on for 23 days that could have set your numbers back to normal.

The fast would not have affected the numbers....the gluten would still be in your system.

The genetic testing seems like a very good idea.

Most of us have had bad doctor experiences

I was blown off by like 3 doctors before finding one that suggested celiac right off the bat. Maybe you should consider looking into finding one that knows a bit more about celiac disease.

Your body seems to hate gluten and you seemed to notice a difference off of it so either way I would stick to the diet.

Good luck and if you have any other questions feel free to ask

I'm always here to email as well

[Lesliean]

Tori- My heart goes out to you. It is terribly negligent that you are treated this way and you have done an admirable job of learning on your own about what conditions might be effecting your health. It can be a lot easier to diagnose ourselves than to get the doctors to do a complete job of it. Oh, I hate to sound so negative but what is the big deal? The condition is treated by eliminating gluten and we beg them for that. It is not like we are begging for drugs! Your gluten free trial sounds quite telling. How could you not be gluten sensitive or Celiac positive with such a big change?

You didn't write what blood tests were performed but sometimes doctors do only a couple tests instead of the full panel and the sensitivity of the tests can be as low as 50%, missing fully half of Celiacs. See:

https://www.celiac.com/st_prod.html?p_prodi...-44105346207.ce

What I did after my blood word (incomplete blood work) came back negative (gluten free 3 weeks at that time) was to use Enterolab which doesn't require eating gluten as it is more sensitive. The full panel can do gene testing including the neurological gene markers, dairy sensitivity, anti-glaindins and malabsorption. See: Open Original Shared Link

My Aetna insurance covered it all and now I am testing my daughter. If the doctor wants to do gene testing and will consider that a positive test for you then it sounds like a good idea if they won't accept testing from Enterolab (if you care about what they say. Enterolab does not need an outside doctor's order). With so few people being diagnosed I don't hear of a lot of knowledgeable dieticians. I mainly hear that the internet lists of safe and unsafe foods is more information then they get from dieticians.

While you might also be allergic to wheat the two conditions are separate conditions. If you do have Celiacs you might also have a temporary problem with dairy as the villi damage to the intestines can reduce calcium breakdown. Make sure you take a supplement if you cut out dairy. Every symptom you mentioned sounded like Celiac disease to me. I think you are on the right track. It could be that you have more than one thing going on but I think you are closing in on the problem. The good thing about going gluten free is that the changes start happening (usually) quickly and seem miraculous.

Keep us posted.

Leslie

[ToriT]

Thanks so much for your replies. I printed out the entro link and the testing link.

My doctor did two tests Iga and igg I think??? something like that. I requested copies of the blood work which they did not send. They did send an overall review which did not list the blood work numbers.

Yes, you are correct that at least I am on the right track. At least there is hope for feeling better.

I have such a burning desire to KNOW exactly what has caused my health to spiral out of control. I want numbers and facts! anyways if not eating gluten helps then by all means I will learn to live without the facts.

I am lactos intolerant. Even had trouble as a baby with all types of milk - goats milk and soy caused me trouble, also.

I am still eating wheat awaiting my next appointment just in case that new doctor wants to order more celiac testing. In the meantime I will read the links given above.

Thanks!!!

ToriT

PS does any one else have problems with anger that rises up all of the sudden? I have this happening to me and it is not in my nature to be like this? It feels so out of control and unnatural. My body actual trembles from extra cortisol or something. It comes over me all of the sudden. I do not know if this is celiac reaction or if it is my thyroid problems - it is strange!

[Lesliean]

Tori-

Fatigue, irritability, mood swings, depression are certainly symptoms of Celiacs. I would imagine intense angry feelings can be too. Hope you root out the causes of your health problems. Mine certainly turned around for the better with a gluten free and lactose free diet. I too had problems with dairy all my life. Temporary damage to the intestines from gluten (till you are gluten-free) can also make the breaking down of dairy a problem.