Elizabeth M Blair

Rogo, I went to the site.  Very helpful.  I will wait to see what a change in dosage does for my symptoms and will try some of the recipes on the site. 

Thanks again!

Thank you so much, Rogo172

I made an appointment with my GI a couple of days ago. I saw her right after I was first diagnosed by endoscopy last summer and she spent an hour with me. I will be seeing her in late April and will bring her my food diary, which she advised me to keep.  I appreciate the link, since I know very little about the thyroid, given that I have had Hashimoto since I was very young.  I am anxious to know if my thyroid corrects with the new dosage and if low thryoid is contributing to some problems I've been having.  I appreciate your imput, your knowledge and your links. Thank you!

My lab result last week were 0.11. I have never had a low result before and the big thing that's changed is my diagnosis of Celiac.  I was given a new dosage to take but don't know whether to be alarmed or not. Have never heard of Histzmine intolerance.

I asked the same question a few days ago.  Had a similar test result.  Hoping someone will answer us.  I did not find anything about Celiac and thyroid on the Mayo clinic site and my pharmacist said he did not know and thought a doctor would be a better person to ask.  But getting a doctor's appt these days to ask is becoming very difficult here in the U.S. 

Pam, I identified with so much of what you said and appreciate your detailed response. I miss eating at restaurants - can't find many I'm sure about, as many people (and businesses) don't get that you can't have foods with gluten anywhere near gluten free food.  Like you, I'm doing most of my own cooking instead of buying processed gluten-free foods but have not yet attempted gluten-free bread; I fear it will be difficult to get it right.  I'm concerned that many foods marked gluten-free add sugar when it's not necessary and contain very little fiber or protein. Maybe some of those things contribute to the nail problem. It looked at my nails again after reading the above post. Actually I don't have splitting nails.  What I have is ridges in them, which are fairly new.  One other thing I will try to get my thyroid tested again. According to one site, breaking nails could be due to a thyroid problem.  It's all so complicated!  My other problems are GI issues so it could be so much worse. Gas, indigestion and constipation, which may be due to one or more of my many food allergies. I can't eliminate everything!  I did make a sheet pan with salmon, fennel, peppers, herbs, potatoes, onions, etc.  And left the skin on.  Yum.  But of course broke yet another nail yesterday.   I appreciate you sharing your experience.  I avoid gatherings too due to the food problem and some people seem insulted if you come but bring your own food.

Thanks again.  I hope we can stay in touch as we have some similar issues.  Elizabeth

 Dear pplewis3d,

Thanks much for your answer.  I already use golden flax seeds daily in my morning cereal and buy gluten-free bread that includes them and other seeds as well (Northern Bakehouse).  My nails also have demonstrated the vertical cracks, even before I learned I had Celiac.  My friends, none of whom have Celiac, are always citing someone they know who finding the diet effortless and dismiss any comments I make about how challenging it is to get it right!  Thank goodness I can go to this site and find others who know how challenging this diet can be. I have a lot of allergies to both food and other items in the environment (including animal hair, dust, smoke etc.), which makes matters even more challenging.  I am keeping tracks of what I eat and noting the symptoms as my GI suggested.  I read online  yesterday that cracking and splitting fingernails is common as one ages (I'm 76).  I'm glad that the flax seeds worked for you! I read online yesterday that consuming more collagen can help with the nails and that leaving the skin on the salmon when roasting it gives one quite a bit of it.  Thanks again. 

The celiac ride has not been smooth for me.  I was diagnosed last July by endscopy and continue to have some problems that I thought would go away. But my fingernails are a new problem. They began breaking in the past month or so - what might I not be getting enough of? My GI specialist prescribed a senior vitamin for women, calcium with magnesium and zinc, B complex with Vitamin C, and D3. I have been taking all of these since last July. She also suggested that I avoid lactose for the first year and recommended that I drink lactose free Whole milk, as I am very under-weight.  I have been eliminating some foods.  Cheese is the most recent food I've stopped eating because of constipation problems and that is slowly improving.  I'm keeping a food journal so that I can track any changes when I eliminate a food, or bring it back again.  Any suggestions on the "breaking fingernails" problem.  During the past month, they have been breaking when I so much as open a door or brush by something. Thanks to this forum, much else has improved.  I have gained badly needed weight, the mild ataxia is gone, and I'm eating mostly unprocessed foods. I feel full of energy. But does seem like every time I turn around there is another additive (which might not be on the label) that I have to watch out for.  Would appreciate your insights on the nail-breaking problem. 

No worries, Janeen.

14 minutes ago, janeen McConniel said:

Soy will be my forever enemy.  My reactions to Soy are immediate and worse than any gluten reaction  I had before, when it comes to going to the bathroom. Dairy is interesting. I can eat Bluebell ice cream with no effects. But other brands cause the gas and bloating. I feel I can eat white cheese with no problem but not cheddar cheese. Casein is my issue, not lactose. Any thoughts on that?

Thanks for your thoughts, Janeen.  A Newby, all I can do is hope my own path become more clear as the year goes on -- with a little from my Celiac.com friends. 

18 hours ago, Scott Adams said:

I recall doing two weeks off of a food, for example soy, corn or casein/dairy, and then adding it back and recording how it goes with regard to any symptoms. Sometimes I had to do this more than once with a food group to be sure.

As far as food sensitivity testing goes, the problem might be that a lot of sensitivities might be uncovered by testing, yet doing this exclusion diet may not correlate directly with a food that the test indicates you have issues with.

Here is my experience with food sensitivity testing:

Thank you Scott.  What a journey you have had.  I'm  feeling grateful that I did not discover I had Celiac until now (at 75 years of age) and I was able to enjoy all foods without worrying about it.  The symptoms I have now are just as bad, so pretty sure it's not just gluten I react to.  I will check with my GI nutritionist about what kind of test I could take to learn more and how much it might cost and if it would be covered by insurance.  So glad to have the learned experience of folks on Celiac.com to consult. 

3 hours ago, Scott Adams said:

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

Scott, I am on month 7 of a gluten-free diet and these is all so intimidating.  I want to try the elimination diet - one item at a time.  My next question is this.

Let's say I eliminate all cheese - for how long would this be necessary to see whether the symptoms I am having might be caused by cheese - one week? two? a month?

Thank you so much for responding with such helpful but complex information. 

And what kind of a practitioner would I go to to have food allergy testing done?

2 hours ago, janeen McConniel said:

this is the best definition I have seen and how I understand it.

 

Functional medicine is an approach to healthcare that focuses on treating the root causes of illness, rather than just managing symptoms. It considers the interconnectedness of various bodily systems and how they affect health. Functional medicine practitioners often use a holistic, patient-centered approach, looking at factors such as lifestyle, genetics, and environment. The goal is to address the underlying imbalances and promote overall well-being rather than just alleviating specific ailments.

I found it here: General Health: Ask Health Professionals (msn.com)

Many of them practice functional medicine because they have been through the same long journey to discover their illness like us. most are connected to a "Wellness Center". however, some wellness centers are more business-minded. 

 

Thank you for this definition, Janeen.  It sounds like a wonderful field. I am going to check with my health insurance plan to see if this is covered. 

What, exactly is a FM doctor?  Could someone explain?

10 hours ago, RMJ said:

Monk fruit is considered a “high intensity sweetener” by the FDA and is not required to be listed as a sugar in the nutrition facts.

Monk fruit sweetener is often mixed with erythritol, which is a sugar alcohol.  Erythritol is only required to be listed in the nutrition facts if the labeling includes a statement about its health effects.  Manufacturers may voluntarily list sugar alcohols in the nutrition facts.

So neither has to be included in the nutrition facts where most people would look to see if there was sugar in a product. The nutrition facts are on the left of the label I attached. This label does happen to include a line for sugar alcohols. Monk fruit and erythritol need to be listed in the ingredients, which are on the right of the attached label, but many people would not know that these are sweeteners from the names.

Did you see the other thread on sugar alcohols and their adverse effects on the body?

Sugar alcohols thread

FDA high intensity sweetener information

Thank you so much!  I will read the article you cite above.  I was so excited about this ice cream. So glad to find out that this is not a good choice.  I product I mentioned did not include the amount of "monk fruit" on the label. I don't understand why manufacturers are not required to list the number of grams in this product.  Irresponsible.

I sent in the ingredients for a ice-cream that promised 0 sugar - it was delicious - but it did not say gluten-free.  Someone on this forum explained, when I posted on it, that monk fruit was known to cause "the toots."  I was at the store again and decided to ask a staff member who walked by and the fine print, which said "alcohol sugar - i.e. Monk Fruit.  I assumed it was a fruit but turns out it is a sugar made from alcohol, so zero sugar was dead wrong.  The staff person fetched her husband who also works there and he explained it to me - he said like splenda or the other sugar substitutes, all of which I dislike.  If anyone has more to say about alcohol sugar, I would love to hear it.  The icecream was vanilla and did not taste sweet in the least, but I do not understand this product called "monk fruit."

are these food sensitivities you mention continuing? I had read here at it was advisable to not consume milk for at least a year after one starts a gluten-free diet (for me in July 23).  But I am so thin that my GI nutritionist suggested that I drink whole milk without lactose, as well as cottage cheese without lactose to gain weight.  I have finally gained a few pounds but not many.  But I continue to have GI issues, gas and bloating, but no constipation.  Since you are studying this now, I am wondering if the best way to determine negative reaction to other foods is the notebook strategy,  writing down what you eat each week and noting how you feel?  Has that been recommended in your studies?  I would like to avoid expensive tests if possible.   

Thanks Trents. I looked up that item you mentioned in an earlier post and could not make sense of polysaccharides other than that they are starches or sugars that the body apparently needs for digestion and other purposes.  I feel so ignorant and the more I learn the more I seem to not know. 

I appreciate your patience with me.  I tried to buy a pre-cooked chicken tonight at the local grocery store.  They said there were only a few spices added to it.  I adked to the ingredient list for the spice mix and it included wheat.  The woman seemed quite irritated with me that I was asking these questions, but thank goodness I did.  Instead I bought a frozen chicken, organically raised and will cook it myself. 

26 minutes ago, trents said:

Those apps can be helpful in a broad sense but are only as good as the data base is kept current. Typically, they still do not cover all the bases in the sense of being able to report traces of gluten that might be found incidentally in ingredients such as spices and colorings that might be manufactured on equipment that is not dedicated to gluten free production. So, the apps would be helpful in revealing larger, intentional sources of gluten but would fall short in processed food items not actually tested to be gluten free. May or may not make a difference for you depending on how sensitive you are to trace amounts of gluten. Actually, once you develop that "sixth sense" as to where gluten can be hidden you would likely not find the apps that helpful. Reading labels is just as effective anyway.

1 hour ago, trents said:

They are polysaccharides and hard to break down.

This journey is so challenging. Now I need to look up polysaccharides to see what they are. I wonder sometimes if I will ever know what I'm doing.  Someone recommended an app called Shift to scan food labels.  Is that worth doing, Trents?  

17 hours ago, trents said:

gums are not necessarily a problem from a gluten standpoint but many celiacs don't tolerate them well for other reasons. Personally, if I ate something with chicory root fiber and Monk fruit you wouldn't want to be around me. Those are famous "toot" ingredients.

Trents, What are the other reasons why Celiacs sometimes do not tolerate gums well? I tried looking that up on line but couldn't find it.  I checked my package of Bob's Red Mill Xanthum gum and it is guaranteed gluten free.

10 hours ago, DoggoLady said:

I searched their website and found this in their faqs:

“All flavors are gluten free but not gluten free certified. All equipment is thoroughly cleansed before and after any runs but we do not test for gluten cross-contamination.”

Wow, thank you so much for checking that. I should have thought of that myself.  This ice cream is so delicious!  But Perhaps it should be a only occasional treat.  Glad that the company is so transparent about not specifically checking for cross contamination.

Trents, I will watch for that problem!  Have not noticed that yet with this ice cream.

I did not find my usual gluten-free ice cream when I went to the store recently and was checking content in new kinds I had not tried. I found a Natural Vanilla ice cream (Rebel Brand) which was advertised as Keto and lactose free and full fat and O grams sugar and it is delicious!    But it did not say gluten free. Here is the content list, the only thing that looks iffy to me are the gums? What do you think? Could it be safe to eat for someone with Celiac.  The biggest problem I've been having as a celiac (only six months post endoscopy diagnosis) is finding food with little to no sugar and more protein and fiber than what I see on the processed gluten free food.  Attached is a photo of the contents of Rebel Brand Natural Vanilla.

Well the file was too big to attach - so here is the list of ingredients:

Cream, water, Erythritol, Vegetable Glycerin, Egg Yolks, Chicory root fiber, Milk Protein Isolate, Natural Vanilla Flavor, Lactase Enzyme, Peruvian Carob Gum, Guar Gum, Salt, Monk Fruit.

I'm 5 foot 7 inches and only weigh 120 pounds. My GI dietician has been having me drink Lactose free whole milk, but am not gaining an ounce so far with my new diet and the lactose free whole milk.

Please advice.  Are the "gums" a problem? 

Elizabeth

Thank you, Scott.  I may use these, it's just a small bag, and then will be sure to use rice noodles from Vietnam and Thailand in the future.  No wheat is those countries!  The esoteric things we learn when on this diet. 

There's a Vietnamese import store In my neighborhood I've  been meaning to check out. Here's another good reason to do so.  Thanks again.

I continue to go through both the places where I live and check food labels.  I found a plastic bag of Rice Vermicelli imported from China.  It lists only two ingredients: rice and water.  But I'm unsure if the requirements for labeling food in China is as rigorous as it is here. Could it contain other ingredients besides rice and water?  Safe to cook and eat it as a Celiac?  If not, I will add it to my giveaway box for those in my life who have no food allergies.  I've been on a gluten-free diet since July after being diagnosed with Celiac by endoscopy and still have much to learn about what I can and can't eat.  Thanks for any comments about this topic.