bincongo

Ok I got my labs back and I just wanted to run some things by some of the smart people on this forum. My doctor wasn't concerned about any of it. She will retest me in 4 months. I know I am a new Celiac so my IgG was 102 and my IgA 11.1, Reticulin Abs - positive 1:20, Endomysial Abs - negative.

I also had a few other things tested. I had taken supplements up until about a week before my labs and then decided I wanted to know what my body was doing without supplements so I quit. My vitamin D was normal and so was my B12 but my B6 was elevated 70, in a range of 5-50. I forgot to ask for a magnesium test. I am close to being anemic but not out of range. My WBC is low 3.74, with MCHC of 31.7 and Neutrophils of 1.99.

I have stopped taking any vitamin B's but I am still taking Magnesium Citrate. I have a problem with constipation and I feel it helps but wondering if there is any danger in doing so. I continue to have problems with sleep but don't know if it is related. I take Levothyroxine but will be switching to Synthroid non generic. My T4 was 7.06 and TSH 1.27 on meds.

All in all I came out better than I expected so maybe my Celiac was caught early but I still would like some advice.

I have a doctors appointment soon and since she is not a specialist I need to know what to tell her. Before my diagnosis of Celiac 2 1/2 months ago I had a feeling of numbness in my upper legs in the early mornings before I got up. Now I am having even more problems in my legs. I have episodes of pain in my groin, hips and upper thighs. It seems to go along with my issues of constipation. I have always been constipated but it has gotten worse going gluten free. I am wondering if Celiac's can have autoimmune nerve problems. My blood work came out normal except for the Celiac panel and vitamin B6 was high. I had taken some vitamin B6 but had stopped 2 weeks before my blood work. I had a BM today but the pain continues. I don't feel I have any weakness with it but it is a odd sensation. The pain kept me from going to sleep last night until I took a Advil.

Ok I am adding my own reply. I know it is hard to diagnose things just by what is said on a computer. I also know that I am more worried about things now that I am a Celiac. I do know that Celiac's can have neuro problems. Maybe what I have is neuro form-itis. Its caused by sitting at my computer for hours a day trying to find answers on this forum.

I had my credit card out and was all set to order a few things from their web site (loaf of whole grain bread, package of 2 pizza crusts, package of cinnamon rolls, package of bagels and a package of one of their granolas. But then I saw the shipping charge. Over $25 for 5 items. I know it's 2-night air delivery but I just can't spend that much on shipping. The only Udi item I've been able to find in any grocery store is the white sandwich bread and I love it and would like to try other things they make too. Our local health food store doesn't sell any Udi items. Very disappointing.

I agree with GlutenFreeManna. Udi's built a new bakery because of high demand and they want to keep up with it and expand, so I would ask store about it and tell them you will buy several of the products they stock. Their bagels are good too.

Dairy products are composed primarily of lactose (milk sugar) and casein (milk protein). It is possible to be intolerant of lactose and still be able to handle casein. The primary sources of high lactose are milk, cream, ice cream (and frozen yogurt which is not like real yogurt). Products such as real yogurt, cheeses, sour cream, have cultures added to them, and these cultures serve to digest much of the lactose leaving a much higher percentage of casein. Some people can ingest the low lactose products without problem; others are intolerant of the casein also. So with dairy you have to experiment and find out what you personally tolerate. Some find that Lactaid helps, others don't. It's an individual thing. I personally only had to cut out milk, cream and ice cream. By the way, eggs are not dairy

So to test, you could start with butter, which although not cultured has had the lactose churned out of it (comes out as buttermilk) and is composed primarily of fat and casein. If you tolerate butter (and if you don't you can melt and clarify it as ghee) then you can add in hard cheeses and see how you do with those, and continue on down the line. Everyone has their own limits of tolerance.

Nice way to break it down. I needed that info too. Now I think I can say I am lactose intolerant but I don't have a problem with casein.

Hi everyone recently been diagonosed with celiac disease (22 years old) ive been gluten free for 8 days but im not happy with my improvement is this normal.

before i was diagnosed

Chronic Insomnia

Erectile Dysfunction

Stammer

stomach pains

Severe constant headaches

Brain Fog

Fatigue

This is how my recovery is going

Chronic Insomnia (no improvement)

ED (first day off gluten fine since then no improvement)

Stammer ( 100% gone )

stomach pains (no improvement)

Headaches ( come and go not as bad)

Brain Fog ( 80% better)

fatigue (70% better)

Can anyone tell me their timescales on recovery thanks please reply x

I wish I had the answer. I am 2 1/2 months gluten free and I have good days and bad days but the good days seem to be more frequent now. It can depend on how much damage your intestine has and if you are still being exposed to gluten although you may not know it. If your doctor hasn't checked for thyroid problems you may want that done. My insomnia has not gone away but I am still hopeful. They say 6 months to a year is about the shortest time to heal.

At the Denver (Jeffco fairgrounds) gluten-free fair a few weeks ago, they said their hamburger and hotdog buns are almost ready for sale. They are working on packaging.

I haven't found a good hamburger or hot dog bun yet so I will be ready to buy them when they come out. I had a sandwich at their store twice and they were soooo good.

I went to Colorado to see my 102 and 1/2 year old mother, I am sure she was never a Celiac. Anyway when I was there I visited an Udi's store and asked questions. It turns out around 6 months ago they moved their gluten free products to a new and much larger bakery. The demand for their products was increasing so rapidly that they had to make a move. Prior to that they made all their baked goods in the same bakery. They have gluten and gluten free products.

Having said that, before I left on my trip some people had complained about the quality of their product being inconsistent for a few months. It is my guess that the move and the demand may have affected that. I would bear with them. I was not able to visit the bakery because it was in a new location but I did buy several of their products at one of their stores. They have a new chocolate/chocolate chip muffin that is really good and they said they will be coming out with new cookies.

I am still a fan of PF Chang's since I think they are really trying where other resturants aren't but I have a funny story. My very first gluten free dining out experience was a PF Chang's and at the end I got the fortune cookie. Out of habit I ate it and to this day I don't know if they are gluten free. I went again to PF Chang's last week and when she brought the fortune cookie I said - Is that gluten free and she said no. I asked why she brought it out and she said so I could read the fortune. I passed on that one.

Somewhere on this site people were talking about Magnesium so after my blood work I brought several different suppliments that were recommended. I am beginning to think that the Calcium Magnesium Citrate is my answer to my constipation and pain. I would guess that is somewhat along the line of MOM but different, anyway it is working. Mirlax was making me worse as far as abdominal pain but this Magnesium doesn't. That is my update if anyone has had the same experience.

Well it's been a little over a month and I feel great. At first it was rough, the first 2 weeks I think my body didn't know what was happening, but now I feel better, better than I've ever felt in my life.

I also find that things affect me differently. It only takes about 3 ciders to get me drunk. Also pills affect me differently. My Dr had given me valium for my fear of flying. I used to take 3 and not really feel much. Now I take 1 and am out of it the entire flight.

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

Divorce isn't always the answer. Maybe you or her will like the new you which usually includes a more possitive outlook on life. So many of us can relate to your story, not always quite as bad symptoms. I was afraid of flying because they don't let you go to the bathroom anytime you want too. Not sure if that was your reason but it can be "real" for a lot of us.

I am a celiac newbie and a forum newbie so this was a little confusing as far as old posts and such. After spending some time here I have pretty much figured out how the site works ~ it takes time just like learning about the celiac diet. It's all a learning process. I enjoy the old posts & now know to check dates etc on food recommends. I refer to this site all of the time and it has been a life saver as I don't have any "celiac buddies" to go to. Thank you for this site!!

I too am new and it took me a long time to figure out that there was a date at the top. It is in small faint letters but I am new to forums in general. I was desperate to get information and my doctor recommended this site. It has been extremely helpful. I just apologize to all the really old posts I responded too. The only thing that would improve it would be spell check.

well they DO have that term: Ibs with Constipation.

yes, its possible your body is just going thru phases of healing- but i would suggest you keep checking with your GI and getting a colonoscopy too- just to rule out anything else like Diverticulitis, polyps, an infection... etc.... it is a huge relief im telling you to get one, and rule everything out. i KNEW Celiac was a possibility for me, but i was also worried about Diverticulitis, and the big "C" word. the Gi removed 1 Benign polyp, and gave me a clean bill of health. felt good.

its good to check everything over

Thanks for the comments. It is hard to include my whole history but 2 weeks after my endoscopy, that found Celiac, I had a colonoscopy and I do have Diverticulitis but nothing else. It is just that this diet seems to be making my abdominal pain and constipation worse. Now during the times when I don't have pain I feel better than ever. So maybe it is just diverticulitis acting up but I am not sure why it is worse now.

I posted some comments in the post diagnosis section a few days ago. I was having abdominal pain, leaky gut and constipation. I had had it for 6 days. Well it quit for no apparent reason but in thinking back it seems I go through about 2 weeks of feeling fairly well and then 5 or 6 days of pain. I am a new Celiac of 2 months now so I don't expect to be healed yet but now I think maybe it is a colon issue and not gluten exposure. I have several questions. Are they sometimes related and part of the healing process? Also I think this problem has gotten worse since going gluten free but I do not have diarrhea with it. I have never had diarrhea unless I was having an "IBS" attack prior to my diagnosis. Is constipation ever related to colitis or is it always diarrhea. I have waves of pain and only feel better if I have a stool or pass gas no matter how small. I need help on getting rid of the constipation also. I tryed Mirlax but I actually think it made my pain worse.

If you have reactions to 'lactose free' dressing, you may actually have casein (milk protein) allergy, rather than lactose (milk sugar) intolerance.

If you're not sleeping well, your thyroid supplement dose may be too high now. I was told to get blood tests for thyroid function every 6-8 weeks while I'm on medication to monitor, as well as watch for symptoms of hyperthyroidism, caused by too much thyroid drug.

If you have more constipation than diarrhea or take calcium, you may need magnesium supplement. Bloating after meals, frequent gastrointestinal infections and irregularity (either diarrhea or constipation) not caused by food allergies or intolerances, may mean you need more probiotics. If your good bacteria are really depleted yogurt won't really give you enough probiotics. A good probiotic is freeze dried with at least 10-50 billion live cells per capsule.

So much good information. I decided to go lactose free after having a reaction to Ben's and Jerry's chocolate/ cappuccino ice cream about a month ago.

I have constipation all the time with leaky gut and gas pain. The constipation is with me all the time but sometimes I can go days without pain. I do take calcium. I am not sure I feel I have bad bloating but I do have a lot of pain that comes in waves.

I am going to be out of town next week so I do appreciate getting some answers before I go. I hope to not feel sick the whole time.

Bummer. It's not flavored coffee is it? Some instant and flavored coffees have gluten. People around here do best with coffee buying beans and grinding their own.

Plain old Taster's Choice, even says gluten free on the label.

Sorry I am still new to this and sometimes press the wrong key to reply. It would seem that taking blood tests for allergies would be easier than an elimination diet. If I can I will wait until my appointment to see how the other test results turn out. I am sure my doctor included TSH and it will be interesting to see if I am absorbing the thyroid medicine differently since I sleep very little at night.

It is like this huge puzzle that just keeps getting bigger. Today I had a salad with gluten/lactose free dressing and water to drink and it didn't set well either. I am beginning to think any food is more than my intestines can handle. I am trying to eat yogurt every other day. People have mentioned probiotic's or magnesium and if so which one's should I use?

You might also want to add TSH to see whether how your meds have changed those scores.

Some members of this board may disagree, but I think ELISA tests are more effective for determining delayed reaction food allergies (IgG and IgA mediated antibodies) than elimination diets or skin tests (which only eliminate IgE or immediate reaction allergies). Guessing which foods are safe and which foods cause problems is difficult because (as you mentioned) delayed reactions make seeing a connection between foods and symptoms more difficult. Also people can develop allergies to almost any food. There are no 'safe' foods. So they would have to start with only water, eat only one food each day, wait a few days for reactions, and then move onto other foods one at a time. That's very difficult.

I would advise you to keep eating all your normal foods before doing the ELISA and carefully interpret the results. My naturopath advised me to consider the general pattern of my reaction results. If I reacted to many foods with low scores, but only a couple of foods with higher scores, I should consider the high scores my 'allergies'. Fortunately I had already discovered gluten, dairy and soy through Enterolab stool tests. So my outstanding high moderate and high reactive foods on ELISA tests were eggs, cane sugar, vanilla and nutmeg. Since those tests I've accidentally eaten each of those foods and observed painful gastrointestinal reactions (except cane sugar which causes tachycardia and nausea).

I take it you're eating gluten-free soy sauce? Soy sauce with wheat would be the source of your problems. Otherwise, yes many celiacs feel better off milk entirely for a time.

Yes it was gluten free soy sauce. This morning I tryed my coffee without any milk and still had a reaction. I use instant coffee that is on the gluten free list so I am pretty sure it is the caffeine that is one of my problems. I had a muffin with it that was made gluten free in my kitchen.

Quick question I know people say gluten cant be absorbed through the skin bc its too large- is it possible though that my hairspray (tresemme) that had hydrolyzed wheat in it(unbeknownst to me)can cause me to get a rash on my forehead and an itchy scalp? Its not a visible rash but its very itchy and I can feel it- also i have had scabs on my scalp before too- anyone else deal with this? I have obviously stopped using it and checked all of my other hair products- yet the rash still lingers

Just curious which Tresemme you were using? I brought Tresemme in order to get away from my Redkin spray which has wheat in it. The ingredients on mine don't say wheat. It is Firm control, Tres Two spray, ultra fine spray.

If you had undiagnosed celiac disease for many years, you may be vulnerable to other autoimmune diseases as well as gastrointestinal problems. I'm 63 and was diagnosed with celiac disease at age 56, after years of gastro symptoms which were misdiagnosed as 'gastritis' or 'ibs. Despite abstaining from gluten, I continued to have gastro symptoms. So I did ELISA allergy (blood) tests and discovered I had 6 additional IgG and IgA mediated food allergies. Even after abstaining from all those allergens, I still had gastro symptoms. Then during the past 4 years I was diagnosed with and treated for 8 different intestinal infections (5 bacteria, 2 parasites, and candida).

After that period I found a naturopath who wanted to determine why I was so vulnerable to chronic infections (gastro, respiratory and bladder). Recent blood tests revealed low white blood count (due to years of fighting infections and/or low thyroid), low MCHC (anemia), low normal T4 and higher than normal TSH (hypothyroidism possible due to Hashimoto's thyroiditis caused by years of undiagnosed celiac damage). Hopefully treating hypothyroiditis will increase my resistance to infections. Then I can just focus on avoiding my food allergens.

Yesterday I had my routine blood work. Last year it turned up that I was hypothyroid and I have been on medication. This year with the help of the people on this site I called my doctor and asked to add several more tests, Free T-3, Free T-4, Vit. B12,B6,B1 and D plus Tissure Transglutaminase and Endomysial antibodies. I hope it will be a start to see how my body is overall. I did not think to add allergy testing.

It has not been a good week for me, off and on abdominal pain for 6 days now. It is hard for me to know if it was one thing that started it or something I am doing every day. I am gluten free to the best of my knowledge and I am very careful. I use Lactaid milk and yesterday I had gluten free soy sauce. I know I may have to eliminate them. Is it easier to take ELSIA testing than to try and find out dietary causes? I have Lactaid milk everyday in my coffee and I am not bothered by it all the time, the same with soy sauce. I just can't see a conection yet with anything that I eat. The only conection I see is that coffee makes it worse but I am certain it is not the cause. My colonoscopy done after my endoscopy this year showed up diverticulosis but I don't think that would cause my "leaky gut" symptoms. I do have a follow up doctor's appointment in 2 weeks and I will ask lots of questions but to be honest I think people on this site know more than my doctor. I do like my doctor and she is willing to work with me.

I took a peak at Scott's book "Cereal Killer's" on Amazon and it looks good but it started me thinking. I looked back at my endoscopy results and it says my villi are complete absent. I am 62 years old and of course I don't know how long I have had Celiac but I was diagnosed 2 months ago. So my question is, what are my chances of recovery. I have my age against me and the fact that the villi are "completely absent." I am gluten free and I do have good days and less bloating but some days I think I feel worse.

I am going to visit my mother in Colorado and while I am there I thought I would check out the Ud'i bakery where their headquarters are. It isn't too far from where she lives. Does anyone want me to talk to them about specific issues, like there shipping process and do they want to stores to keep them frozen or any other questions?

no no no no- it is not gonna heal your hiatal hernia- it will only make it worse. seriously. Nexium and other strong meds are only good if you're right in the middle of an ulcer-

otherwise- the stuff is awful.

a hiatal hernia is an anatomical issue- proper diet IN COMBINATION with gravity & relaxation & reducing the stress in your life... plus maybe having an EXPERT therapist gently move your stomach down into its proper position.

the only reason why a proton pump inhibitor would "heal" your stomach, is INDIRECTLY- while in the middle of an ulcer-> when your own body is producing excess stomach acid and then attacking itself where the H.Pylori are burrowing in into your lining. so reducing the acid will prevent further damage.

im sorry to go on and on- but the overprescribing of all of these harmful pharmaceuticals usually messes us up more.

and your doc says 6 months??? by then, you will have made your stomach a perfect nesting place for H.Pylori.. and you will have compromised your digestion... then you'll get an ulcer and then you'll have to take the Nexium again... thus ensuring Big Pharma continues to make money off of us being sick

ok, sorry, i really am shutting up now.

Hey thanks for the info. I don't think my doctor said it would help my hiatal hernia, I said that. The endoscopy said I had diffuse gastritis so that is what the Nexium is for. My thinking is that the bloating from being Celiac and not knowing it was causing pressure on my stomach and pushing acid up so I developed GERD but I would think now that I don't have bloating very often it would seem that problem would be resolved. I don't know how long it takes to clear up gastritis. There were no ulcers seen. I tested neg. for H.Pylori but positive for Celiac.

I agree with all the comments so far. I realized I was lactose intolerant when I had a bowl of ice cream after being gluten free for a couple weeks. I may have had lactose problems all along but my Celiac symptoms might have covered it up. Anyway I tryed all the gluten free milk substitutes and didn't like them but many people do. I have chosen to take Lactaid milk and seem to be doing fine with it. You can get it in any grocery store. To me it tastes like real milk, I guess because it is in a way. Some people have problems with the lactose in milk and others with the casein in milk. If you only have problems with the lactose then you can take Lactaid milk. You might get lucky and not have problems with milk at all.

Wait, is all "autolyzed yeast extract" made from Barley?! Gosh, I had no idea! Maybe that's why I've been feeling horrible! I feel dumb now Thank you for the heads up! That gluten is everywhere I tell ya! lol

Not all autolyzed yeast extract has gluten but it depends on the source. Someone wrote on a different thread that they had contacted Lipton and were told it was gluten free, except for the kosher one. I guess we need to hear it from the horses mouth.