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Totally Confused.

Imanistj

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Imanistj Contributor
Imanistj
Posted

I am trying to decide whether to continue gluten-free or return on a regular diet.

Not so brief history--My major complaint is occasional numbness of my fingers, severe muscle pain, almost immediate exhaustion, profuse sweating of my head and face, extreme facial flushing, a very rapid pulse and rapid dehydration when I attempt slight to moderate exertion. I can't weed my garden, shovel a little snow, did a small hole or carry several 35 or 40 pound bags from my car to the garage (dog food for four Siberian huskies) for more than five minutes before I am near collapse. Following this exertion I usually fall into bed in terrible pain and exhaustion and sleep for several hours. When I wake I am in severe pain all over but do feel a lot better a few minutes after rising. However, the muscles that were involved remain very tender for about 3 days after the incident.

I took my complaints to my fibromyalgia doctor (he is a rheumatologist) and he ran blood tests relating to muscle inflamation. My tests were positive for autoimmune liver disease! Im a retired nurse and this scared the bejeebers out of me. The good doctor repeated the tests to rule out any lab error and the results were the same. At this point I asked fo a consult to a gastroenterologist who is also a hepatologist. He listened to my story and ordered more labs. They came back positive foe celaic! The doctor told me to go on a gluten-free diet. BTW, the first words gout of my mouth when the nurse called me with my labs were "Oh no--not gluten free!" When I next saw the doc he told me I had celiac and I challenged him by asking if he could make a diagnosis without a biopsy. He told me he was going to order a biopsy, but yes, the positive transglutaminase test was enough for a diagnosis, especially since I also tested anemic and low for B12. I replied that at least I could go back on regular food prior to the scope. He said I could eat regular food if I wished but that I would need to be gluten-free for 6 months for the villi damage to disappear. At this point I bagan to doubt his expertise. I ate regular food for the 2.5 weks prior to the biopsy. When I awoke from the scope he said my small bowel looked normal but the biopsies could tell a different story. Well, the biopsies came back negative. I learned yesterday that he took four biopsies from the small bowel and they all showed no microscopic damage. We discussed my genetic tests and I have both DQ8 and DQ2 results and have the highest risk for developing celiac.

I told him I am utterly miserable 24/7 on the gluten-free diet because I am OCD regarding thoughts of food and giving in to the almost constant urrge to eat something "good" as in baked goods. I am also slightly Asperger's and the texture and mouth feel of foods has to be acceptable or I am irritated. I appreciate loads of healthful foods and that isn't the problem--I love baked goods and no gluten-free recipe or substitute I have tried, and there have been many, are worth eating, in my opinion. Either the taste is off or the texture annoys me. I didn't hold back and I let him know how serious I find this deprivation. The dear man replied I should simply omit baked foods and I might also lose weight. A double whammy when I am so low is really poor! He said considering my response to the iron and B12, both back to normal in one month on supplements, and my normal bowel that I could probably get away with cheating occasionally. So far, I have not had any improvement on the gluten-free diet and I wouldn't know if cheating caused me any trouble. I asked him since I have celiac but no small bowle damage, what was I hurting when I ate gluten. He responded, "Nothing." Then I remembered the positive results and I asked him about my autoimmune liver disesae. He said my enzymes and functions were all normal so he guessed the test results indicate I have a "marker" for autoimmune liver disease.

What!!!! I gave up and asked him what he wanted me to do. I told him I had decided to remain gluten-free until the first of the year and if I still didn't have any improvement I was going off the diet. He said OK, my genetics could get me anytime, and to come back in six months for repeat blood work and to get that blood work every six months.

My dilema is: 1. Stay on the gluten-free diet until I see him again in six months and I would expect my blood work to be pretty good. 2. Go back on a regular diet and stay on it until I see him again, asuming my symptoms don't get worse, and maybe I won't be any worse off that I was when he first tested me, or I might be reacting to gluten and actually have worse test results. 3. Stay on the diet until the first of the year, as planned, and if no improvement, go off the gluten-free diet. I will see him again in May and I don't know how he would interpret any test results due to an on/off gluten intake.

I have numerous (very expensive) substitute flours, xanthum gum and several gluten-free mixes in my cupboard so I am presently continuing the gluten-free diet. When they are gone I will have to make a decision as to whether I remain gluten-free or go back to a regular diet. One other thought, I will be 66 in April. If my genetics haven't caught up with me by now, maybe they won't before I die. Considering my genes, the medical conditions I currently have and lifelong overweight with long periods of obesity, I would be surprised if I live to be 80. It would be really vexatiuus if I were to die of something other tham celiac if I opted for a gluten-free diet forever.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It is likely your liver enzymes returned to normal because you were on the diet. It is not uncommon for us to have elevated levels when we are first diagnosed. False negatives in both blood and biopsy are common. The NIH estimates about 20%, since you had positive blood work that would indicate that you need the diet, IMHO. It can take a while to heal, for some of us complete healing can take as long as 2 years and the 6 months he stated would be more the norm.

Have you eliminated dairy? If not you should consider it. The area of your intestines that is damaged by celiac is the area that forms the enzyme we need to digest dairy and many of us have issues with it until we heal.

How careful are you about cross contamination? We need to be very careful about any cooking for others and many of us don't allow wheat flour items to be made in the home as the flour dust stays airborne for a while and when we inhale and then swallow we get glutened. The same applys with wheat based cat litters, if you use them switch to something else. Have you changed your toaster, wooden utensils and cutting boards? Are you making sure you have your own condiments, butter etc so you are not getting gluten crumbs?

I am sorry you are having such a hard time and that you are slow to see improvement. Do stick with it though. It will be worth it in the long run once your able to get out in that garden again.

I hope your feeling better and stronger soon.

nora-n Rookie
nora-n
Posted

Twoandahalf weeks back on gluten is not enough, should be at least six weeks, better three months.

You were gluten-free for a while, and that does skew the results. It does not take six months for biopsies to get "normal", it can take much shorter time. Four biopsies are not so good, several places recommend at least 12 biopsies.

I had negative biopsies too, after being gluten-free.

Yes, autoimmune hepatitis is triggered by gluten.

High liver enzymes are also typical.

About the taste and texture etc. of gluten-free food, one has to get used to it, please give it time. It is also good to bake, and to reduce the amount of starchy foods (eat more meat, fish and vegetables instead)

Have you read about the gliadin-casein-connections to autism? maybe you find info by doing a web search using Gluten-free Casein-free .

I think it might be wise to stay gluten-free for a year like you write.

You need to stay off all gluten, and not cheat like the doctor said. It takes the villi four months to completely heal from each cheating incident...

nora

Imanistj Contributor
Imanistj
Posted
  • Author

Thanks for the replies. I am a retired RN and have had to practice "sterile technique" for my entire nursing career. I do understand how to detect and eliminate CC. I have it fairly easy because I live alone and don't have anyone else in my kitchen--ever. I cleaned my cupboards and donated all my gluten food. I don't eat out because my first and only attempt left me close to tears. Apparently, the Olive Garden I visited has not yet had effective training. I think I was the first person ever to ask for a gluten-free menu. My friends know they can't feed me anything other than a Diet Coke. I have a copy of Cecelia's Marketplace "Gluten-Free Grocery Shopping Guide." I have several Wegmans within an hour's drive and that chain is doing well with its gluten-free aisle. They also have an extensive and frequently updated 31 page list on-line that contains all of their store brand gluten-free items. I spend hours in food stores reading every label and consulting my guide book. I currently take 18 medications daily, some are more than once daily doses. Five of these 18 meds are supplements. I have finally heard from all the manufacturers and all are gluten free. My Colgate toothpaste is gluten-free. I'm not even handling wheat in the cats' and dogs' foods. I don't believe in feeding grain to them. I do use a hand cream occasionally and I haven't checked that or my bath soap or shampoo. I have read that if I don't get these products in my mouth I don't have to worry about them. I also haven't checked my dish detergent or laundry products for the same reason but I think I will check my Palmolive dish washing liquid just in case. I really don't think CC is much of an issue for me. I anyone finds something I should change, please tell me.

nora-n Rookie
nora-n
Posted

Nancy, I have seen several postings from various people who did not get completely well until they stopped using shampoos and creams etc with wheat ingredients.

But I think that most celiacs are okay with them.

I do not use shampoos and creams with wheat in them. Or perfume.

nora

GFinDC Veteran
GFinDC
Posted

Hi Nancy (imanstj),

I am posting a few links for stuff that might help you decide. The first one is about latent celiac and silent celiac disease. People with silent celiac don't always experience intestinal symptoms from gluten.

Latnet and silent celiac on this site

The 2nd link is to a list of associated conditions for celiac. You can find them by typing in "celiac associated condition" in a browser. One of them is autoimmune liver disease. If you check various sites for associated conditions the lists vary. It seems to me the list should really be any autoimmune disease.

Open Original Shared Link

This last one is a Mayo Clinic page about celiac complications.

Open Original Shared Link

I also wanted to say that I felt pretty desperate to find a substitute for "real" bread at first also. I never got a real good bread made (I was avoiding yeast at the time), but I did ok with pancakes. I made them with pea flour, and although they were green, they tasted fine.

After a while I started eating more whole foods, rice, and quinoa and meat and veggies, and got away from eating baked goods. I quit trying to make bread and just concentrated on eating different foods. I got out of the bread and cookie and cake habit. Now I do buy Glutino fiber bread every once in a while, or sometimes Mi-Del gluten-free ginger snaps. But mostly not. I do use Mission corn tortillas a lot. I have some various baking mixes and such and now that it getting to be baking weather again (winter) I may try some of them. I just wanted to say that you might find that baked goods are not that important to you after you do the diet a while. They are not a big part of my diet, that's for sure.

Just some stuff to ponder if you are so inclined. :)

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