marlene57

Just wanted to throw my 2 cents in....

Also had the uncontrollable cravings and they do seem to be calming down, now, but I had to stop buying the Namaste Spice cake mix. It is so good!!! I would have eaten the whole cake, but hubby would have noticed, so I ate it in 2 days instead of one.

I recently made the cake for my birthday, and was able to resist eating the whole thing. I wish all of the gluten-free foods were as good as that cake mix!

Hi everyone,

Thank you so much for all of the info! I've been trying some of the suggestions....prunes are gross

but I can drink prune juice and that worked for awhile. Fleet enema did nothing...

I ordered the HCI but they kept emailing me with problems concerning my credit cards so I just cancelled the order. Have to get out to the health food store soon. Also want to get the magnesium.

I also forgot about the mineral oil. I actually have some and am going to try that with oj.

Haven't checked out the turmeric yet, but plan to. Did it help your boils? I ask because I get boils, too.

As for fiber...I get terrible abdominal cramping and pain when I try to eat a lot of fiber like brown rice, flax seed, rice bran. The Gastro told me I may be one of the few people who can't tolerate high fiber.

Thanks again!

Marlene

I've posted the cigarette question a few times on here and never found a response, and I'm still really curious about it, so if anyone does hear from the cig companies please do post. Truthfully I've always been curious about that "other" kind of "smoke", too...but since it ain't legal I won't ask!

Hi Gillian,

I have to say that I love your name. My daughter's name is also Gillian.

Also, I've wondered about the "other" smoke, too, but since I've not had a reaction, it seems fine. As far as Cigarettes, I really don't know. I smoke about a pack a day and have tried to quit many times. The problem is, every time I quit, I get very ill with severe fatigue, weakness, depression and abnormal weight gain.

I read somewhere that cig smoking can mask the symptoms of Hashimoto's disease. I'm hoping to quit again, soon, and be tested for Hashimoto's. But then, my doctor won't do the anti body test for Hashimoto's, so I feel like I'm in a catch 22.

Currently looking for a new doctor...

Marlene

Hi,

Just thought you'd like to know....

I've had "sandy" stools for quite some time now. Since being gluten-free, it only happens when I get glutened.

I notice it when I wipe myself. It is terribly abrasive and makes me raw down there. A cool wipe helps make it feel better. Just hold the wipe on the sore area and your baby will feel better.

Marlene57

Hi CarlaB

Thank you for bringing up the Lyme disease. It made me check it out and I not only have 38 of the symptoms listed, but I've have that very distinctive rash several times. I went straight to the phone and asked the Dr. to test me for Lyme. I live in NH where there is a moderately high incedence. Would you be so kind as to give me the address to your favorite Lyme sight? I'm going to look for Lymenet now.

Thank you again,

Marlene57

So, did they diagnose you based on blood work or dietary response?

I'm asking because I'm gluten intolerant AND have Lyme Disease. Heart palpitations and shortness of breath are Lyme symptoms I get. I don't like to just bring it up all the time here because it's a celiac forum, but the symptoms are so similar to celiac and many Lymies have gluten problems (you can see on Lymenet ... it's a regular topic of conversation).

Lyme is aggravated by stress.

It's something you can check out ... symptoms are at Open Original Shared Link.

I get digestive symptoms from gluten. It's pretty clear when I get glutened. There are a lot of non-GI symptoms of celiac disease as well ...

If it sounds like you, let me know and I'll tell you about other websites ... the one I gave is not my favorite, but it has a good symptom list.

Maybe others here will have other suggestions for you to check out.

Hi Georgie,

I also am folate deficient, but have been for a few years. Only found out about the celiac about a year ago. I did go off of the folate supplements, thinking as you do, that I'm better and can get it from foods. I'm back on it because my last test shows I'm still deficient. I attribute it to my intestines not being completely healed yet. I've read that it can take adults 2-3 years to fully heal.

I also have Pernicious Anemia and get injections monthly.

Good luck!

Marlene57

I have just been dx as folate deficient. Has anyone any idea if Celiac could be causing this ? I also have Pernicious Anaemia/ low B12. I was dx with that 12 months ago , and Celiac... and have been having B12 shots regularly , and regular tests for B12 & Folate. Folate until now has been perfect and high.

If I am eating gluten-free now- does that mean that my drop in Folate is not caused by diet but is a genuine folate anaemia ? I mean .... has being Celiac anything to do with this ? After being gluten-free for 12 months I thought I would not get 'worse' re villi damage and absorption.....Why is it worse now than 12 months ago?

Will taking a folate tablet work for me ? If my absorption is poor ? Does anyone else have folate anaemia here ?

Thanks!

I will email them tomorrow.

Have a nice night,

Marlene57

I'm no help since I live in Nothern NH but I just wanted to say hello to a fellow NH Celiac

Actually, I can help! The Seacoast Celiac Support Group is run by a great bunch of folks. They actually came up here not too long ago to give a bit of a speach and they had so much info. You can email Dan Davis at djdavis@mediaone.net or William Muzzey at munroe@nh.ultranet.com - I am sure that either of them would know of some great doctors in your area. They have a newsletter they send out with a TON of great celiac info, updates, etc. Good luck to you!

Cathy,

I'm in the same boat as you. Just can't lose weight. At this point, I'd just be happy to feel more energetic.

Marlene57

I feel a little bit envious of those who were overweight and have lost weight without trying, since going gluten free.

I wish I could say the same, but it looks like, I have missed the boat, as I am now over a year down the gluten free trail, and there has been no weight loss. But I do put it on when I get glutened, which seems to be pretty much everybody elses problem too.

So I am just going to have to be happy with how I am, or work on it. That sounds so hard.

Cathy

I have just read your post and went and ordered the l-glutamine. I'm excited to get it and see if it helps my digestive problems.

I've also done some research to see if it's safe. Here's an excerpt from a site I found:

However, the use of glutamine as a free amino acid has never been associated with any form of brain damage. Glutamine is in fact abundantly produced in the brain as a vital defense against ammonia and also against excess glutamate. The main defense against glutamate excitotoxicity is the synthesis of glutamine by cells called the glia, or more specifically, astroglia or astrocytes. They are most abundant type of cell in the central nervous system exhibiting high amounts of glutamine synthase. The healthy brain is very well equipped to deal with glutamate. But, when the brain is damaged due to stroke or injury or the accumulation of various neurotoxins including certain drugs, the stage is set for glial dysfunction and hence for glutamate excitotoxicity.

Here is a link to the site:

Open Original Shared Link

From what I've read, I think it's certainly worth a try.

Thank you for the info,

Marlene57

Is there anyone who can recommend a good Dr. for Celiacs in southwestern NH. I live near Peterborough, but will go to Concord or Manchester if I have to, to find a doctor who knows about Celiac!

Thanks,

Marlene57

I saw that episode and was shocked to find out about the neurological symptoms of Celiac. I just saw the dr a couple of weeks ago because I'm losing my balance, have trouble with short term memory, problems with my eyes, and say or type things that I'm not thinking (wrong words).

Now I'm waiting for an app. with a Neur. and will ask about Gluten Ataxia which I've seen mentioned here on the board.

Marlene

They had a whole segment about celiac disease yesterday! The child was having seizures, not thriving, developmental problems, but no GI symptoms. The mom had celiac disease and ended up putting the pieces together herself (figures ) Anyway, it was a really good show! They actually spent some time talking about it!

Thank you Burdee,

I'm going to try the enzymes. I was taking tums every night for years, and I don't feel that I'm absorbing nutrients the way I should. Folate, Vit. D dificiencies.

Marlene

Constipation was also a lifelong problem for me. I was 'regular' in that I had a daily bowel movement, but always had hard stools, unless I took copious laxatives, which also gave me excruciating cramps. I learned to take magnesium and Vitamin C daily to just have 'regular' daily movements, but never soft enough to prevent hemorrhoid pain. Eliminating gluten and dairy prevented occasional episodes of impacted stools, but I still had hard stools. After treatment for Klebsiella bacteria followed by high doses of probiotics I experienced a few weeks of 'normal' soft stools. However I later returned to my 'regular' hard stools ... UNTIL I began taking digestive enzymes with Betaine Hydrochloride.

Even after I eliminated gluten and my 4 other food allergies (dairy, eggs, soy and cane sugar), I felt uncomfortably full after most meals. So I decided to try 'stronger' enzymes with HCl. Then I read a book entitled "Why Stomach Acid is Good for You" by Jonathon Wright (a local doc). He said that low stomach acid prevents absorption of magnesium (which I already take for regularity) from foods. I had been misdiagnosed with 'gastritis' years ago and given acid blockers and antiacids, which depleted my stomach acid. I now realize I never had gastritis or 'gerd', but merely had compromised digestion from yet undiagnosed celiac damage. After I took digestive enzymes with HCl for about 2 months, my stools became 'normal' (soft) EVERY DAY without fail (unless I take a medication like Tylenol PM which dries up EVERYTHING).

If you have ever taken acid blockers or antacids and now have constipation no matter what you do, consider taking digestive enzymes with HCl. You may not be absorbing enough magnesium from your food. All the fiber in the world didn't help me and even caused occasional impacted stools. Magnesium, which helps the intestines absorb water into the intestines, also controls smooth muscle movement. However HCl helps you absorb magnesium and other important nutrients from the foods you eat. I LOVE having normal and regular bowel movements every day for the first time in my life!

BURDEE

Hi everyone,

I need to find a Dr. who knows about celiac disease. My GP knows absolutely nothing. My Gastro says there's nothing to do except suffer with the symptoms.

I was dx about a year ago just by going gluten-free and getting great results within 48 hrs. But...I have not been checked for all vitamin dificiencies. I've had Pernicious Anemia for years and get monthly injections, was told about 3 years ago that I have Folate dificiency, and a few months ago, found out I have low vitamin D.

Got my bloodwork results and found that I was only checked for glucose, Folate, and vitamin D! Shouldn't they all be checked?

A couple of weeks ago I saw the GP for neurological symptoms...wake up some mornings with dilated pupils that don't undilate (?) for about 1/2 hour, off balance, short term memory problems, and typing or saying words that aren't the ones I was thinking. He says it's something I'm eating!

I've just been reading about Gluten Ataxia and have become very concerned. If anyone knows of a doctor in my area who knows about celiac disease, I would very much appreciate a recommendation! At this point, I'm even willing to travel to Concord or Manchester....I live near Peterborough.

Thanks for letting me tell someone about this, and any help you can offer.

Marlene

I don't eat dairy because it bothers me. I haven't for many years. I try to drink a lot of water, but I will try the 64oz. per day.

Thank you all for the advise. There is so much more info here than I've been able to get from Drs.

Marlene

Miralax is the answer. I swear by it. No cramping. I take it every 3-4 days. I take it at night and the next day I am good to go. It is great

Thank you!

I will try it.

I'm one of those Celiacs who's overweight and constipated. Although, when I do go, it's very loose. The Gastroenterologist says to take laxatives, but I'm very leery of anything that may harm my intestines more than they already are.

Any suggestions on what to eat, take, or do to get going again? Also, any ideas why I get like this? I feel like this happens when I try to eat cereals like rice bran, or buckwheat.

Thanks,

Marlene

Marlene,

I have an OT question for you. I noticed in your siggy that you were first diagnosed with Hidradenitis Superativa. My son has that and is on Tetracycline for it. Do you believe that to be celiac related?

Hi,

No, I never thought of it as being related to Celiac. I have found Hydrenitis Suppurativa on some "suspected" autoimmune lists. I believe that it is autoimmune as it does "flare up" and causes fatigue and inflamation. It's also one of those diseases that not all Dr.s know about. The first time I asked about it, I was told it was from being dirty. I was so horrified, I didn't ask again for about 5 years.

Does the Tetracycline help your son? I have found nothing that helps. Stress does aggrevate mine and will cause it to flare.

Going Gluten free didn't help it at all.

Good luck to your son, I hope it's not real bad and doesn't get worse.

Marlene

I agree with the above answers, but would be concerned about triggering other autoimmune diseases. I suffer from a few of them and know that they can become worse with stress...emotional and physical.

Stress can also trigger new autoimmune diseases.

I also would be very cautious and only go thru that if I thought there was a very good reason to do it.

Good luck and best wishes,

Marlene

Hi and welcome,

I would have your doctor check the following levels -

Vitamin D

Vitamin B (all of them)

Vitamin C

Iron

Folate

Phosphorous

Calcium

Due to the fact you were diagnosed later in life severe malabsorption would cause your body to not be able to get these from your diet. Vita D deficiency can cause slow weight gain and all the symptoms you are listing as can other deficiencies.

Can you tell me the symptoms of malabsorbtion? I have gained about 100lbs in the last 9 years. Since I was diagnosed a year ago, I've been able to maintain my weight if I eat 1200 - 1500 calaries a day, but cannot seem to lose weight.

(This is gross, but I need to ask) I see undigested food in my bm everyday. Is this a symptom of malabsorbtion?

Thanks for any info you can offer.

Marlene

About 15 years ago, I quit smoking for a year and a half. I became extremely ill with migraines, bowel problems, severe weight gain (60 lbs), severe fatigue....

My doctor at the time insisted it was PMS.

I started smoking again, got better right away and lost all of the 60lbs.

I always believed it had something to do with quitting smoking, but never mentioned it.....who would believe that quitting would make me sick?

Recently, I quit again for 3 months....same thing happened! Since I suffer with autoimmunes diseases, I did a search for autoimmune diseases and smoking. Low and behold! Smoking can mask the symtoms of Hashimoto's disease (autoimmune hypothyroidism)!

I started smoking again so I could function while I saw my current doctor. He already thinks I'm strange, but he listens and accomodates my requests. He tested me for Hashimoto's and it came back negative. He told me to quit again and have the test redone when I'm feeling lousy.

That's where I am now...waiting to feel lousy so I can find out if I have Hashimoto's.

It never occurred to me that cigarettes have gluten! How this relates to getting ill when I quit, I don't know, but am interested in any info available.

I obviously have to quit, but cannot be so fatigued all the time. I care for my husband who is in early stages of Alzeimer's.

I'm actually hoping I have Hashimoto's because then I can quit and be treated. If that's not it...I don't know where to go from here.

Thank you for all of the info here.

Marlene

I agree that family members act strange. My mother recently discovered that she carries the Celiac gene. She called me and appologized, saying it was all her fault. My grandmother keeps telling me that no one else in her family is sick and she's never heard of these diseases (autoimmune diseases).

During a conversation about my childhood, I discovered that a cousin of my grandfather's had MS. Grandmother feels better because the autoimmune diseases that I, my daughter, and uncle suffer with are not her "fault".

My sister still doesn't understand why I'm horrified at her messy kitchen with cereal and crumbs everwhere (she has 3 kids). I know she thinks I'm nuts. I don't go to her house anymore.

I have a friend who refuses to accept my diagnosis. We used to go out to eat about once a week. It's too much of a hassle for her now, so we don't go out.

Most people, though, are very understanding and go out of their way to make food I can eat. I've had to tell them to just let me bring my own food. I can't trust that they will remember things like: don't cut my veggies on the cutting board they use for cutting bread, don't stir my noodles with the spoon they stirred the wheat noodles with, etc.

I tried pointing out some symptoms that my family have, and got ignored. Now, I just say that autoimmune diseases run in the family and they should let their Dr. know.

Your not alone with getting weird reactions.

Keep yourself and your family well, and ignor the unbelievers.

I have ridged fingernails. I heard there's a connection with my juvenile rheumatoid arthritis. One of the first things my rheumatologist said to me was to point out my long fingers and ridged nails - both idicators for JA and RA. I wonder if it could be an indicator for autoimmune disease in general?

I have had the ridges for as long as I can remember. I never really thought much about them til now, just filed and buffed to make them look better.

I'm very curious about the RA thing. My son has extremely long fingers and toes. People have always commented on them. Next time I see him, I will check for ridges, too. He doesn't have RA, but now I will worry about him getting it. My daughter has Behcet's Disease (rare auto immune disease) and I will check her fingernails, too. I'm curious about the ridges being signs of any auto immune disease.

I wish the doctors knew more about these diseases...

Marlene

Thank you, thank you, thank you all for this post and replies!

I've suffered for years with constipation and pain. Every doctor said the same thing - "eat more whole grains". Now I think I've eaten so much Shredded Wheat, 12 grain breads, and whole wheats, that I've made myself very ill.

It was when I decided to search the internet for reasons for my abdominal pain, that I found out about celiac disease. I was shocked to see that celiac disease could be the cause of my B12 and Folic Acid deficiencies, and could even be linked to the mysterious, very itchy rash that I have!

Why don't the doctors see these links? Is it because I'm overweight and suffer from constipation?

I was so disappointed today when my blood test came back negative for celiac disease. I was hoping that this was the answer. Now that I've read your messages, I know I have to stay gluten free and prove it to myself. I also don't feel like a hypocondriac anymore.

Thanks again,

Marlene