Gi And Dietitian
Posted 23 September 2011 - 01:38 AM
Last week I finally got around to seeing a GI and a dietitian and both were useless. The GI insisted quite rudely that because I suffer from constipation rather than diarrhea that this means I don't have Celiac. He mocked any examples I gave him of reactions to certain foods (one for example, being bedridden with pain for 7 days after eating a muffin.) and then told me that a lot of his Celiac patients often "cheat" on their diets and consuming gluten doesn't cause them such severe reactions.
I've recently discovered that I have a terrible problem with eggs and that the egg in the muffin is what probably contributed to the pain I experienced during that example, and I have also been having pain, bloating and cramp-like sensations when I consume fruits or veg high in fructose, or anything sugary that's sweetened with fructose syrup? So those are also possibilities.
I'm willing to accept perhaps I've been mixing up what I thought was "gluten reactions" with some of these other food issues, but removing gluten/wheat from my diet for a month definitely did alleviate a lot of my symptoms. If I don't have full-blown Celiac, maybe I'm a bit wheat intolerant?
Either way, I'm appalled with how the GI assessed my situation. Instead of exploring all of these possible food intolerances, he literally tried to force a diagnosis of Lupus Disease on me. Even though I have NO symptoms whatsoever. Then he tried to blame all of my problems on stress. Then he changed his mind. An argument then nearly broke out when he refused to listen to what I had to say about my BM problems. I have no idea why medical professionals do not seem to care in the slightest that I can't gain weight and that I have LOTS of white "bits" and mucus in my constipated BMs. Surely, that's undigested food?
Anyway, they took stool, urine, and lots of blood samples to check for a long list of things that he didn't bother to explain to me. The only thing he did comment on was that some of the blood tests I had back in June that my GP said were "nothing to worry about", are something to worry about! So I'm having my B12 and folate levels checked. I was also offered a biopsy to test for Celiac if I can do the gluten challenge for 4 weeks. But to be honest, his general attitude about it made me feel like a hypochondriac. I've decided to wait for all of these mystery test results to come back before I decide about going for the biopsy.
After that horrid appointment I was so upset I came home and decided to start eating gluten again, and I've been experimenting with it for the past week with confusing results. For the first two days wheat actually seemed to regulate my BMs and I wasn't having much discomfort, but then I started experiencing constipation that was only relieved (rather painfully) after taking a laxative on Saturday. I continued to eat glutenly food for several days after that, and had no normal bm. In fact yesterday, I started passing mucus, or what looks like undigested fat. Along with that, I've magically started developing cystic acne once again, my abdomen feels very achy and I've lost a further 2 pounds, despite the fact I'm eating more calories. My insomnia and brain fog have also returned in full force.
The dietitian I saw was a nice lady, but just as useless as the GI. Her main goals were to help me gain weight (I'm 5'4'' and can't stay above 96 pounds now) and to regulate my BMs. (BMs that are more regular on a gluten-free diet...) Her advice? Drink a pint of milk a day, and start including WHOLE MEAL bread with my meals. I tried to explain my current issues with possible food intolerances, wheat, and the fact that eggs and fructose-filled foods seem to cause me pain and cramping, and she said nothing. In fact, she told me to start drinking fruit juice again despite the discomfort it causes. I'm supposed to see her again in 6 weeks to see if I can gain weight by eating this way.
I'm actually off to see my GP in a few hours to see if any of my results are back. I wasn't even told how or when I would receive them. Though I'm dreading it because as I said above, she considers most results to be normal even if other professionals don't.
And that's that really. I have a casual GP that never takes any of my medical tests seriously and rarely investigates them, a rude GI who made me feel like a hypochondriac, and a dietitian who wants me to eat gluten. I don't like to be dramatic but I feel really depressed about my life now. I feel as if I'm being treated like an anorexic patient and that the only reason I have problems is because I'm not eating enough. No one seems to understand that I used to eat everything I wanted! I had a very healthy, full diet, but that didn't stop my health from deteriorating the way it has in the past year or so.
My family who were being supportive before are now losing their patience with me and the entire situation. I don't blame them, but I am upset that the majority, including my boyfriend, believe I am clinging to Celiac for no reason. If it isn't Celiac I'm fine with that! I love food, and I'd love to go back to eating whatever I want without issues again, but it's not that simple. I just want to get healthy so I can live my life again. If I drop any more weight I'm scared I'm going to end up in hospital.
Anyway, rant over. I'm sorry it went on a bit.
To sum up: Egg is a definite problem, fructose could be a problem, and wheat/gluten could also still be a problem. I'm anemic and probably deficient in B12 and folate. I can't gain weight, but did gain weight and muscle when I went gluten-free for a month. Does anyone have any advice on what I should do from here?
A month ago if I had known my appointments were going to be this disappointing I would have just gone gluten-free anyway by myself. But the reason I'm relying on medical professionals now is ever since I had this weird incident with eating a muffin that made me very ill for a week, that was when the extreme sensitivity to egg started, along with the pain/cramps from too much fructose. Before that, eggs made me feel a bit sick but I could tolerate it as an ingredient, and I didn't seem to have much of a problem with fructose at all. So naturally I'm a bit concerned with what is going on inside my gut!
Thanks for reading.
Posted 23 September 2011 - 02:21 AM
So you have to learn to manage the doctors (the gatekeepers to the tests) and manage your own medical care. Rule number one: get copies of all test results. Unless a result is wildly out of whack, many doctors will pronounce them as normal, because they can't be worried about one number that is one too high -- the only one who is going to think and question it is you. Number two: get copies of all reports that doctors send to other doctors (they are sneaky about what they say behind your back and can prejudice the other doc against you.) Okay, you may think I am sounding a bit paranoid here, but it happens. "This hypochondriacal 41-year-old lady recently consulted me... blah, blah, blah" Number three is research: google, google, google. Doctors hate it because it makes you smarter about some things than they are, but it is your only defense, and you sound like a smart person who has already done this. Be selective about what you believe online because there is a lot of garbage out there, but good solid medical research (if it has been done) is your friend. And Number Four is to arm yourself with all this information when you go to medical appointments (print out the stuff to shove under their noses when they start getting smart alecky with you).
Very few doctors have any background in nutrition and food intolerances, and you can be very quickly dismissed by those who don't.
I used to be like you -- had a friend who said she loved going out to eat with me because I could eat anything. Well, if you look at my sig. block, that's certainly not the case any more And that's because I was dismissed as a hypochondriac who needed psychological support for 20 years (I didn't go because I didn't need it, but that was the diagnosis that followed me around.)
If not eating gluten makes you feel better, you have a gluten problem. Whether or not it is celiac disease or "merely" gluten intolerance is a toss up. Either way, you obviously should not be eating it. If you were to want testing for celiac, you would have to go back on gluten for at least two months at the equivalent for 3-4 slices of bread a day for the testing (blood and endoscopy with biopsy) for celiac to be anywhere near accurate/ And even then it may still be negative and you would still have a problem with gluten..... And the biopsy may be negative and you wuld still have a problem with gluten.
And then, as you have found out, there are other intolerances that go along with the gluten. Soy is a common one. Fructose malabsorption is another, and unfortunately many people do not tolerate eggs. If it helps at all, I believe you
I have found dietitians to be a bit hopeless; nutritionists are better,as are naturopaths, if you can find a good one of either. There are lots of people on this board who have fructose problems who I hope will come on and help you out there. But unless you are going for an official celiac diagnosis, I would certainly quit the gluten, cut out lactose, stop eating eggs (there are egg substitutes to use for baking, and usually you can have egg whites (it's the yolks that are usually the problem) and limit your fruits, just stick to veggies, meat, fin fish, rice and see how you go for a few days. If this makes you feel better than you are quite a ways down the healing track.
I am truly sorry you have been having such a horrible time with the medical professionals and now even family. We will try to be your family and help you through this
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 23 September 2011 - 06:53 AM
I have had FABULOUS luck with a Naturapath. Generally, they listen and are willing to look at the whole picture - and they will treat with vitamin, diet therapy.
I suggest looking for one with an endocrinology specialty. There's a licensing board for ND's - go on there are search in your area.
Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND.
Responsive to iodine withdrawal for DH (see quote, above).
Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Posted 11 October 2011 - 11:58 PM
Thank you for the advice, both of you. I have been trying to simplify things and stick to foods that seem safe to eat for now. So far it's chicken, turkey, lamb, most fish, gluten-free pasta, gluten-free rolls, plain tomato soups, and gluten-free cornflakes (though I'm slightly suspicious of Corn at the moment) brocolli, green beans, lettuce, hazelnuts and almonds, spinach, quinoa (I seem to have issues with rice, but quinoa is fine) other veggies in very small amounts, bananas, blackberries, raspberries, white grapes, and dairy. I'm very reluctant to cut out dairy because of my weight problem, dairy is a very easy way for me to try and add extra calories to the day and it doesn't seem to cause me any problems. I'm able to handle vanilla icecream, custard and dark chocolate as long as it has no added nasties like gluten, fructose corn syrup, and so on. I've gained a couple of pounds eating this way for a few weeks, so until I know what's going on with my doctors I'll just stick to this and keep an eye on corn and dairy for a bit. I also started taking some papaya enzymes with larger meals which seems to help a LOT.
I'm just a bit scared still with how insistent the GI is on my problems being something like Lupus, and I'm worried that this weak positive is beginning to indicate I could have something like that on top of all of these food issues. I will definitely get copies of all of the tests I had done as soon as I can figure out where to get them from, seeing as it seems like my GI doesn't even have all of them himself yet!
Is there any point in me going to my GP to ask if I could have some blood tests done to check vitamin levels? Because everyone is still ignoring my anemia, my B12 and folate levels haven't come back yet, and I'm curious to see if I'm lacking in anything. Maybe I could see if I'm low in anything and try taking some suppliments in the time being to see if it helps with my health in the meantime?
Posted 12 October 2011 - 10:54 PM
"IgG is positive... "
If it is a typical rheumatologist, it will have been brainwashed by the pharmaceutical industry and its training that diet has nothing to do with arthritis, and it will therefore reinforce Mr. Incompetent's misdiagnosis. The good news is that by going gluten free, you may not halt the associated arthritis type diseases completely, but you certainly can put a big dent in them in terms of how bad they are. I have also heard more than once "could be lupus" or "could be MS" and it was not. I do have spinal arthritis but at this point I am old enough to actually be allowed to have arthritis without it being considered so unusual - how generous of them.
The problem is, for further testing, you need to have been consuming gluten steadily all along. For an official diagnosis, they are likely still stuck on this "must have biopsy positive with bloodwork" routine. But since this is UK, not here, you also may need the diagnosis for financial reasons.
I would go to the medical office and insist that they give you the copies of the test results you have had already, and that you are not leaving until they do so. I have had to do this with another doctor who was pulling this routine: doing a single test, telling me to come back on an appointment to discuss test results, and the next appt was not available for 7 to 8 weeks. Oh, and there were cancelled appointments, too. And this was for neurological problems, imagine getting a short call from an office person telling you you had brain lesions and then being told if you wanted to discuss this with "the doctor" you had to wait weeks for an appointment. I always laugh at the people pretending that we don't have excessive wait times here, and try to scare us with stories of how bad it is in other countries.
You could also look into seeing if you could get genetic testing, that, and a positive response to diet, and the bloodwork, may get you farther with the next doctor. But do insist you get your test results.
Be sure if you take any vitamin supplements that they are gluten free, that is really important.
If you are trying to gain weight, a good way to do it is to eat some vegetables, which you are doing, and to add some good fats to the diet, such as from olive oil and coconut milk and coconut oil, and butter, if you can stand it.
Posted 12 October 2011 - 11:41 PM
I am high fructose sensative and will have the same effects from it that I will from gluten. That doesn't mean you would, everyone is a little different. I can't eat things like BBQ sauce, drink mixes, some candy because of the high fructose but I am fine with fruit (which has natural fructose rather than high fructose). You might read about high salicylates and see if there is any connection there.
Personally, I disagree with the advise from your dietician. If this could even possibly be celiac it is very possible you could be dairy intolerant, and if that is the case the milk will not help you gain weight at all. If being off glutens is helping remain off glutens and experiemtn with the rest as there very possibly is something else giving you issues but you will probably be the one that has to find it instead of the doc.
Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.
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