So Frustrated .... Just Trying To Get An Answer

[yorkieluv 6]

I am sorry this is going to be long... I started getting sick about 1.5yrs ago with a variety of symptoms that all seemed unrelated but now appear to be either celiacs or non-celiac gluten intolerance to me. I started off having pain in my hands, ran a low grade fever of 99. extremely fatigued, started having migraines, pain in my joints all over, brain fog that was awful. During this time I went to my primary doctor who suggested a sleep study that was neg. but showed restless leg. I went back again still feeling like I was being poisoned because I couldn't funtion to even work. This time she ran an iron test which showed severe iron def. anemia (ferritin 3 and iron 26). She gave me some iron to take and blamed it on my menstrual cycle which I told her was not the slightest issue. Tried taking the iron but it didn't help my iron, so they sent me for a colonscopy/endoscopy to see if there was active bleeding. Nothing found except H.pylori and in the mean time I am getting sicker and sicker, thinking I am dying. Bloated, diarrhea, burping, gaseous(horrible), getting short of breath alot, feeling like I was dropping things (being clumsy) and all of the other. This doctor basically told me to live with it I was female of child bearing age with little kids and it was probably due to stress. (This was the end of August. 2010)

Went to a new doctor who really listened ran a ton of tests, stool, saliva cortisol test and found out I had a problem with wheat, rye, barley, casein and a few other foods. She said it could be celiac' so drew blood and sent me to a nutritionist to help me start a gluten free diet. A month later called me and said the celiac's test was negative but in the mean time I was feeling so much better on the diet that I questioned the test so I sent off for the genetic testing with Enterolab. I wanted to know if I even had the gene for it because it was so serious. The test showed that I had double genes for celiac's. Let me back up and say my Vit D was 15 (very low), low B12, low iron so I had started on all of these as of November when I got the results from the new doctor. Before I got the genetic testing back this doctor told me I should be able to start eating gluten and casein again within about 6 months. So, I made an appt with this doctor told her about the genetic tests results and she told me it only meant that I was predisposed and I could try eating a piece of cake in a couple of months and see how I felt. I tried to ask about feeling better on the diet, having so many symptoms that could be celiac's plus the positive genes, could the blood test have been wrong that was negative? Got nowhere, just see you in a few months.

(This was January 2011)

Decided to go to a gastro doctor, had appt. today, he totally blew me off. I don't WANT to have celiac's but if I do I want to know. He basically told me he didn't believe people could be non-celiac gluten intolerant and that I couldn't have celiacs because I didn't have diarrhea everyday. He said that if it was celiacs my ttg test would have been positive and I can't do a biopsy because I have been gluten free for almost 3 months but nobody told me to get have a biopsy before I started this crazy diet. Totally disregarded the low iron, vit D and B12. Asked if I took a lot of ibuprofen or aspirin, said I worked inside so my vit D was going to be low. Then prescribed me two antibiotics he said would kill any kind of GI bug, parasite or whatever that I might have. He said after taking the antibiotics start eating gluten and see how I feel. He said he had heard of Enterolab but he didn't understand the results, that is wasn't mainstream for the genetic testing. Anyway I left feeling like I was a crazy hypochondriac and wondering if I was just imagining how sick I was. He did keep telling me how rare it was for someone to have celiac's.

What would you do if you were in my shoes? I am in the medical field and I am so disheartened by how all of this has went.

Thanks for listening, I just had to vent!

[Takala 415]

I would find one of those "rate my doctor" websites for the alleged gastro doctor and let him have a suitable rating. After checking to see if he actually had a degree and certification.

He basically told me he didn't believe people could be non-celiac gluten intolerant and that I couldn't have celiacs because I didn't have diarrhea everyday.

Just because there are not a lot of us doesn't mean it isn't real.

http://www.bmj.com/content/330/7494/775.extract

http://jnnp.bmj.com/content/77/11/1262.abstract

You can also google Marios Hadjivassiliou, and gluten and celiac, and draw up LOTS of links.

You will want to check with the pharmaceutical manufacturer to see if the drugs you were given a script for are gluten free.

If you live in a Lyme area with the ticks, get tested for Lyme disease if you haven't already, it is one of the triggers for becoming gluten intolerant, along with assorted other infections like H. pylori and giardia.

That's a shame bozo- gastro doc doesn't keep up with the research literature re symptoms, and doesn't realize that this disease tends not to get diagnosed until massive damage occurs, but at least you have a reason to stick with a gluten free diet since you have all the symptoms and a gene test showing you are predisposed and you responded to a diet change.

You will also want to check that the multivitamin with iron and the B complex and the vitamin D calcium/magnesium supplements that you may want to start taking are all gluten free. We don't absorb nutrients properly, and need this stuff at least in the beginning to get back up to par. If you still have low iron you can try something real low - tech like spoonfuls of blackstrap molasses, which is high in it. Don't take "tums," that stuff daily is too much bicarbonate, try something like calcium citrate.

The clumsiness and twitchiness can be a sign of peripheral neuropathy, and the good news is that since you haven't mentioned losing all feeling in your limbs yet, you should recover a lot more quickly than some of us who went decades being told it was "fibro" or like MS or something. Last summer I realized that after 7 years gluten free I could now even feel my right foot and calf muscles. These medical snots who haven't gone through something like this, have no earthly clue what it is like to have a lot of nerve damage. The migraines also can be a sign of brain damage caused by this so called non disease of gluten intolerance,( don't be scared, they are just little spots) that goes away also.

You may not want to have this, but after you adjust you will be very happy that you have the one auto immune disease that can be controlled by a change in diet. And being relatively young, you will then not be so sick that you end up disabled, you will be able to avoid the other diseases that go along with this.

[mushroom 1,209]

I must say that I have not yet met one GI that I would trust, respect, or even vaguely like. As Takala says, they tend to be real snots and know-it-alls without even knowing what they don't know. This one's conduct is shameful and his lack of knowledge a disgrace to his specialty. Just because he can't see the elephant in the room does not mean that there is not one standing right over there by the wall No such thing as non-celiac gluten interolance indeed!!! Go back under your rock, doc! And why on earth would you take TWO antibiotics when you don't even know if you need an antibiotic at all? At least he could test your gut for bacterial overgrowth or parasites or whatever it is that he thinks that these antibiotics might kill! A lot of us got into trouble initially with too many antibiotics! These could just kill whatever good bacteria you have left in your gut.

You might try taking a methylcobalamine sublingual B12 supplement to bring your B12 levels back up of up if you are not already doing so. They tend to bypass most of the digestive system and get absorbed better. How is your Vitamin D doing these days and what kind of dosage are you taking?

As for going back to gluten, I definitely would not do it. You don't want to do any more damage to your body. And if your blood testing was negative, your biopsy could well have been negative too, but don't forget this is only testing you for celiac disease, not for non-celiac gluten intolerance, which does in fact exist and which you probably have. This is just my own observation (I believe there is some research to support it) but I believe there is a greater likelihood that those with predominantly neuro symptoms are more likely to test as non-celiac.

[cahill 190]

mushroom and Takala give the best information

Unfortunately for some of us the answers only comes though being our own best detective.

Unfortunately for some of us the slightest clue as to what is going on doesn't come until after extensive damage is already done.

You know you have a issue with wheat,rye ect and wither a gluten intolerance or celiacs the treatment is the same.A gluten free diet.Knowing wither or not it is celiacs would be a wonderful piece of information to have, but not necessary nor does it change the course of treatment.

I had to giggle at the use of the word snot to describe the GI doc ,,,,although i will admit I would have use a much stronger word ( not as nice)

[yorkieluv 6]

And why on earth would you take TWO antibiotics when you don't even know if you need an antibiotic at all? At least he could test your gut for bacterial overgrowth or parasites or whatever it is that he thinks that these antibiotics might kill! A lot of us got into trouble initially with too many antibiotics! These could just kill whatever good bacteria you have left in your gut.

I know I was really bothered by this. One antibiotic he said was harmless and would kill anything and the other he said would kill Tropical Sprue if I had that because I had traveled out of the country to Central America. Funny he would rather believe I had Tropical Sprue vs. a Gluten Sensitivity.

[yorkieluv 6]

Thanks for the advise! I am going to stick to a gluten free diet until proven otherwise. I know I feel better. I am taking B12 sublingual, Vit D, a probiotic and digestive enzyme.

[mushroom 1,209]

mushroom and Takala give the best information

Unfortunately for some of us the answers only comes though being our own best detective.

Unfortunately, mushroom and Takala both learned the hard way too And both had to be their own detectives. (Probably why we're so passionate about it ) Glad to be of service.