Concerned Father Needs Your Help.

[ble123]

Hello Everyone,

I am 36 and the youngest of 9 children. My sister was misdiagnosed with MS for 5 years and then they figured out it was celiac. My mother is now 78 years old. She has bad osteoperosis, had lynphoma, melanoma, and a very bad stomach throughout her life. She was just diagnosed. My brother was having problems with his thraot. He was just diagnosed. My 1 year old daughter was having abdominal pain, distended stomach, mood swings, and other syptoms. She had a blood test which showed a possibility of celiac. I would not let them do the biopsy on her so they told me to get tested. All of my blood test came back positive.

We have been on a gluten free diet for a year now and my daughter was doing much better. She is now three and she is starting to complain of her belly hurting and of some joint pain. She has terrible reflux and her belly is very distended. We just had her to the pediactric celiac specialist at CHOP in Philly. She agreed that her belly was distended and is running a new series of blood test. She wants us to cut sorbatol out of her diet for now to see if that changes anything. Does anyone have any input on this. Are we not being strict enough on the diet? Has anyone come across this situation before.

Thanks,

Concerned Father

[ptkds]

You may need to re-check all the ingredients of things in your house again. Make sure her lotions, toothpaste, and anything she touches is safe. If she is in daycare or preschool, make sure they are sticking to her diet and she isn't sharing with any other kids. Make sure they aren't using Playdoh in her class. Go over EVERYTHING she has contact with. Don't eat out for a while even if you think the place is safe.

Good luck!

[Darn210]

If you aren't having any symptoms, concentrate on rechecking foods/meds(vitamins)/shampoo/bubble bath/etc that she uses and you don't. Besides preschool, don't forget Church Sunday School.

[AliB]

Hi. This does seem to be a problem that I am coming across with great frequency on the forum. different ones often say that although they were getting better they have started to regress.

Answers often come back that perhaps other intolerances have occurred or developed.

My digestion collapsed in January. When no reason could be found and Celiac blood tests came back negative I put myself on to gluten and dairy free to see if it would help. Within a few hours I had relief from the terrible stomach pain I had been experiencing for several months.

However, there was still some underlying problems, particularly when I had products made with gluten-free flours and products, and with sugar, and I quickly realised that gluten and dairy wasn't the only problem. I am actually very carbohydrate intolerant.

Just in the last week I have picked up on something called the Specific Carbohydrate Diet (SCD). It is aimed at children and adults with stomach and bowel problems like Celiac (particularly where their problems go further than just gluten), Ulcerative Colitis, Diverticulitis, etc., and is also having great success (100% in some areas!) with children with ASD and Autism, and behavioral problems. It has also been found to help other non-digestive illnesses too.

If you google 'Breaking the vicious cycle' it will give you the main website for the diet (although there are others) - the site name is the title of the book written by Elaine Gottschall whose little girl was rescued from her terrible UC by this diet (if you go to the famous SA river name US book-selling website (I haven't put the name in as it would be deleted by the autosearch) and put in the book title you can read the 188 (yes 188!) reviews for the book). Elaine went on to gain degrees in Biology and Microbiology so that she could research the diet and back it up scientifically.

She explains why we are so carb intolerant and what foods and which carbs we can eat to really help the gut recover properly. I have only been doing it since Monday, but already I am seeing the benefit. Within 3 days I am now able to tolerate foods that were a problem a week ago!

It does seem that in many cases, once people have been on the diet for a while and their gut has really healed properly, they can then occasionally enjoy some tolerated carb treats without having any problem with them (which I am looking forward too!)

Although the diet is somewhat limiting, it is surprising with a bit of ingenuity and imagination what you can create and there are quite a few websites now with some great recipes that are very helpful for the diet.

If your little sweetie is getting problems again it may well be worth seriously considering.

My hubby has been doing it with me (he hates being left out!) and already he is getting benefits too - he is much more able to concentrate, is more alert, his fibromyalgia is better and he does not have the jumpy nerves any more, and I am much happier as a passenger when he is driving too, as he is a lot more focused than he used to be, which has allayed a lot of my anxiety!!! LOL!

[Lisa]

You can test her again to see if her antibodies are at the normal level.

Open Original Shared Link

You should know that in children, these test are not always reliable though.

I hope you find the source of her discomfort soon.

[YoloGx]

Hi. This does seem to be a problem that I am coming across with great frequency on the forum. different ones often say that although they were getting better they have started to regress.

Answers often come back that perhaps other intolerances have occurred or developed.

My digestion collapsed in January. When no reason could be found and Celiac blood tests came back negative I put myself on to gluten and dairy free to see if it would help. Within a few hours I had relief from the terrible stomach pain I had been experiencing for several months.

However, there was still some underlying problems, particularly when I had products made with gluten-free flours and products, and with sugar, and I quickly realised that gluten and dairy wasn't the only problem. I am actually very carbohydrate intolerant.

Just in the last week I have picked up on something called the Specific Carbohydrate Diet (SCD). It is aimed at children and adults with stomach and bowel problems like Celiac (particularly where their problems go further than just gluten), Ulcerative Colitis, Diverticulitis, etc., and is also having great success (100% in some areas!) with children with ASD and Autism, and behavioral problems. It has also been found to help other non-digestive illnesses too.

If you google 'Breaking the vicious cycle' it will give you the main website for the diet (although there are others) - the site name is the title of the book written by Elaine Gottschall whose little girl was rescued from her terrible UC by this diet (if you go to the famous SA river name US book-selling website (I haven't put the name in as it would be deleted by the autosearch) and put in the book title you can read the 188 (yes 188!) reviews for the book). Elaine went on to gain degrees in Biology and Microbiology so that she could research the diet and back it up scientifically.

She explains why we are so carb intolerant and what foods and which carbs we can eat to really help the gut recover properly. I have only been doing it since Monday, but already I am seeing the benefit. Within 3 days I am now able to tolerate foods that were a problem a week ago!

It does seem that in many cases, once people have been on the diet for a while and their gut has really healed properly, they can then occasionally enjoy some tolerated carb treats without having any problem with them (which I am looking forward too!)

Although the diet is somewhat limiting, it is surprising with a bit of ingenuity and imagination what you can create and there are quite a few websites now with some great recipes that are very helpful for the diet.

If your little sweetie is getting problems again it may well be worth seriously considering.

My hubby has been doing it with me (he hates being left out!) and already he is getting benefits too - he is much more able to concentrate, is more alert, his fibromyalgia is better and he does not have the jumpy nerves any more, and I am much happier as a passenger when he is driving too, as he is a lot more focused than he used to be, which has allayed a lot of my anxiety!!! LOL!

That is so great. My mother was on a low carb diet as a child and it really helped her. Unfortunately later on as a young adult away from home she went back on carbs including wheat etc. and I believe its why she had migraines and difficulty concentrating, some low thyroid and joint issues and eventually glaucoma and some dementia. Hard to convince her though to take it seriously now however despite her also developing DH again at age 92. Apparently she first had DH as a child. I guess the big thing here is to not make the child feel deprived. We her children had similar issues but she didn't want us to suffer feeling different so she didn't do anything or tell us what might be going on. I wish she had given us the choice!

[Ursa Major]

The first thing I would do is eliminate all dairy and soy to see if it makes a difference. If it doesn't, I would eliminate nightshade vegetables, and last do the low carb diet (after you make sure no gluten is sneaking in somewhere, of course).

[Takala]

Depends on what you mean by "strict enough on the diet." You didn't say what she was eating, or what could be accidently going into her mouth, you just gave your family history.

People who are gluten intolerant also can be lactose (milk sugar) or casein ( milk protein) intolerant, and/or soy intolerant, and/or other grains intolerant as well. Or intolerant to nightshade family or to eggs, legumes... there are a lot of people here with multiple things to avoid.

Also, food manufacturers tend to change ingredients constantly, and what was safe last week may not be safe this week, or worse, the product may be mis labeled and the "natural flavorings" may have changed as to content, as well as the "modified food starch" or the "maltodextrin," as to what grain product theses were sourced from. I just tracked down a reaction I was having to an item I'd purchased for years that was labeled "gluten free." Well, it's a generic, and the name brand, same item, probably the same manufacturer when I read the nearly identical labels, started putting "natural flavorings" AND "maltodextrin" on the label. The generic just has "natural flavorings." Guess what.

I've read a lot about how American maltodextrin is "supposed" to be safe because it is "supposed" to be made of corn, I say that's not true anymore because we are importing more grain products from other countries where maltodextrin isn't "corn." Oh, and some other countries use the word "corn" as to mean "wheat."

Hypervigilance in label reading is necessary unless we start using both more education, consumer clout, and changes in government regulations to force manufacturers to label food accurately.

It could be as simple as she is accidently getting cross contaminated every day or every other day by a food or thing previously thought safe, the first thing to ask is, "what is different ? about what she is eating.

As to sorbitol, yuck, but no gluten. Also aspertame, yuck. Small children and artificial sweeteners, yuck. But that's just my reactions. Watch out for soda pops, also. Sugar free sodas are not your child's friend.

[Ursa Major]

Takala, you're right in saying that even in the USA they are not always using corn to make maltodextrin. Two days ago I bought some Terra chips (Sweets and Beets, and Mediterranean Vegetable chips). I thought (falsely) that all the Terra chips are gluten-free and ate one of the Mediterranean ones. I thought something wasn't right and FINALLY read the ingredient list. Well, it included 'wheat maltodextrin'. I felt awfully stupid not to have read the ingredients before trying them! Those chips were manufactured in the US.

The Sweets and Beets are gluten-free, though (sweet potatoes and beets chips).

[YoloGx]

Takala, you're right in saying that even in the USA they are not always using corn to make maltodextrin. Two days ago I bought some Terra chips (Sweets and Beets, and Mediterranean Vegetable chips). I thought (falsely) that all the Terra chips are gluten-free and ate one of the Mediterranean ones. I thought something wasn't right and FINALLY read the ingredient list. Well, it included 'wheat maltodextrin'. I felt awfully stupid not to have read the ingredients before trying them! Those chips were manufactured in the US.

The Sweets and Beets are gluten-free, though (sweet potatoes and beets chips).

I've read that sorbitol can be made from gluten. It certainly doesn't agree with me. I doubt its good for sensitive kids.

Here here about multiple allergies or sensitivities. Mine go beyond just gluten to include all nuts and peanuts, many seeds (esp. sesame), goat milk and meat, all milk or anything fermented except now for nonfat org. yogurt, vinegar, citrus except for lemon, most raw fruit, melons (probably due to the mold), carrots and beta carotene, parsnips, dong quai, wintergreen, aspirin, most antibiotics, sulfa drugs. Plus I am sure I forgot a few others... Probably didn't help I first developed celiac as an infant and after age 4 was put back onto gluten.

Celiac causes leaky gut syndrome which then makes the body more likely to become sensitized by various other foods, reacting against the undigested proteins like foreign invaders. This is why I suggest (as have other herbalists) taking soothing emollient herbs such as marshmallow root and slippery elm. This does not mean aloe vera which in any excess taken internally can cause D.

Some good supplements that help heal the lining of the gut are again the combo enzymes bromelain/papain and nattokinase or serrapeptidase taken away from food. All of which act as fibronylitic agents which help get rid of scar tissue anywhere in the body including the intestines as well as plaque in the blood vessels etc. Its also good to take a good plant based digestive enzyme combo as well as pancreatin to help the body digest better in the intestines.

Taking vitamin D as well as a good B complex is also really important in anyone that has difficulty digesting carbohydrates. If someone is unable to digest carbs in general I would highly suspect a vitamin B1 deficiency--which I have too. Changed my life for the better to take the co-enzyme B's since I can't take the ones that are yeast based and the other ones did me little good although I took them for years. Just make sure the B's you take don't have sorbitol!

[AliB]

I have just made some of the yogurt Elaine Gottschall suggests and will leave it for the at least 24 hours she recommends. Apparently then most of the lactose and casein gets broken down by the bacteria - it also gives the bacteria time to culture more and lactic acid is created to mop up any remaining lactose.

Most commercial yogurts are only fermented for 5-6 hours. I will be interested to see how it turns out. I hope it will be ok. Unfortunately I have nowhere warm to put it overnight but I will stick it on a radiator when I wake up in the morning. I might end up having to invest in a decent yogurt maker. My Mum used to put it in the airing cupboard overnight. I haven't made any for years.

Yolo, do you eat a lot of other carbs in the form of legumes and rice, etc.? I wonder if you are holding your healing back. Have you found that you have gradually become intolerant to more foods as time has gone on?

I keep seeing these posts where different ones say that they were better for a while but their symptoms are coming back, and could it be an intolerance to something else? I think what is happening is that whilst cutting out gluten and/or dairy helps because it is omitting a large chunk of carbs out of the diet (lactose - milk sugar is a carb), people than start to replace those carbs with other less used carbs, like corn and soy.

After a while, they then find that they are becoming intolerant of those foods too - as the body then develops an inability to process those carbs, the intolerance spreads and they find that they are becoming intolerant of more and more foods - either because the degree of damage is so great that the digestion now can cope with very little or because the goblet cells are producing so much mucous in order to try and protect the gut that the enzymes cannot get to the foods to break them down.

The undigested foods then not only act as food for the bacteria, promoting overgrowth and an imbalance in the gut causing even more problems, those foods and the toxins and acids produced by the bacterial overgrowth also ends up triggering the mast cells into histamine release and allergic reactions.

If the gut was healthy, we would not have allergies. Honest. We are only as healthy as our gut is. From our head to our toes, so many illnesses and diseases are caused by digestive imbalance, even if people don't know they have an imbalance.

Do you know, I am sitting here typing this and in front of me down either side of the page is adverts for carbohydrate-laden foods. gluten-free Cakes, waffles, brownies, beer and a list of gluten-free breads, cookies, crackers, pancakes, pastas, cereals, snacks, bagels, baking ingredients and bars. The only things that aren't carbohydrate free is books! No wonder people aren't getting any better!

If only they would STOP FEELING DEPRIVED and trying to replace the gluten carbs with gluten-free and realise that the ones who are deprived are those who are eating all the carbs and the junk - if they are not sick already, they will be sooner or later! Don't crave pizza and pasta, crave a good honest healthy cooked meal with beautiful veggies and fruit!

[AliB]

!

[YoloGx]

I have just made some of the yogurt Elaine Gottschall suggests and will leave it for the at least 24 hours she recommends. Apparently then most of the lactose and casein gets broken down by the bacteria - it also gives the bacteria time to culture more and lactic acid is created to mop up any remaining bacteria.

Most commercial yogurts are only fermented for 5-6 hours. I will be interested to see how it turns out. I hope it will be ok. Unfortunately I have nowhere warm to put it overnight but I will stick it on a radiator when I wake up in the morning. I might end up having to invest in a decent yogurt maker. My Mum used to put it in the airing cupboard overnight. I haven't made any for years.

Yolo, do you eat a lot of other carbs in the form of legumes and rice, etc.? I wonder if you are holding your healing back. Have you found that you have gradually become intolerant to more foods as time has gone on?

I keep seeing these posts where different ones say that they were better for a while but their symptoms are coming back, and could it be an intolerance to something else? I think what is happening is that whilst cutting out gluten and/or dairy helps because it is omitting a large chunk of carbs out of the diet (lactose - milk sugar is a carb), people than start to replace those carbs with other less used carbs, like corn and soy.

After a while, they then find that they are becoming intolerant of those foods too - as the body then develops an inability to process those carbs, the intolerance spreads and they find that they are becoming intolerant of more and more foods - either because the degree of damage is so great that the digestion now can cope with very little or because the goblet cells are producing so much mucous in order to try and protect the gut that the enzymes cannot get to the foods to break them down.

The undigested foods then not only act as food for the bacteria, promoting overgrowth and an imbalance in the gut causing even more problems, those foods and the toxins and acids produced by the bacterial overgrowth also ends up triggering the mast cells into histamine release and allergic reactions.

If the gut was healthy, we would not have allergies. Honest. We are only as healthy as our gut is. From our head to our toes, so many illnesses and diseases are caused by digestive imbalance, even if people don't know they have an imbalance.

Do you know, I am sitting here typing this and in front of me down either side of the page is adverts for carbohydrate-laden foods. gluten-free Cakes, waffles, brownies, beer and a list of gluten-free breads, cookies, crackers, pancakes, pastas, cereals, snacks, bagels, baking ingredients and bars. The only things that aren't carbohydrate free is books! No wonder people aren't getting any better!

If only they would STOP FEELING DEPRIVED and trying to replace the gluten carbs with gluten-free and realise that the ones who are deprived are those who are eating all the carbs and the junk - if they are not sick already, they will be sooner or later! Don't crave pizza and pasta, crave a good honest healthy cooked meal with beautiful veggies and fruit!

Hi Ali,

Thank you for your concern. I have been a little concerned too especially waking up today and feeling this ache in my low back and generally being out of it again and freaking out that maybe my UTI is going to not go away and take over my kidneys. This is the big Freak Out for me, believe it, given my history and having half of my right kidney scarred years ago due to too much citrus plus eating gluten.

Actually for me as time has gone on I am less intolerant than I used to be to various foods--can you believe it? However I come from a multi generational family that tends to be allergic to a lot of things while pretending they are normal...(a few hidden expletives here!). Plus I got radiated as an infant from the Hanford Nuclear Power Plant Green Run Release and some subsequent releases as well which I am sure just added insult to injury. Further my low back and hip was damaged as a child from a wall we were constructing that fell on my back side. This affected my kidneys too as well as the psiatic nerve. This is one reason I practice yoga pretty religiously. Fortunately with my malabsorption celiac body, I am very flexible and can usually adjust myself these days.

Some of all my allergies are true allergies that never go away and others are food intolerances caused by leaky gut due to the celiac. Of those I figure eventually they may go away though my system tends to get sensitized so I just don't know. I used to rotate my diet but do so less these days. I actually can eat more things than I used to and have been fairly satisfied with my dietary choices--so you see I have gotten better. And yes the herbs do really help I have really noticed that -- as have some other celiacs that I have helped. I just may have a more extreme case than some due to length of time I have had it etc. The gods kept trying to kill me but I just wouldn't let myself die.

Usually I don't eat that many grains period although I was eating those teff/quinoa/amarnath pancakes for breakfast pretty regularly for a while. Not now that I am ill however with first the bronchitis and then the UTI. I am also starting to question the value of having any grains so reglularly--so I think you are so right about that.

Usually its cooked or raw vegetables, some meat and some cooked fruit except for papayas and the occasional strawberry or banana I hate to cook but probably should. However now while I still have the UTI, I am eating more raw salads and some cooked vegetables with potato or yams and some cooked fruit and raw papaya. I was also eating a lot of yogurt of late but found maybe I shouldn't due to residual slight lung congestion. Instead I have decided to sprout my sunflower and pumpkin seeds. I figure I need to get some protein somewhere despite my UTI. I feel like I am about to blow away with all this not eating much substantial of late.

This afternoon after going out shopping after I saw the acupuncturist, I grabbed some left over banana bread I made a few days ago and had given my mother. I ate it this afternoon just because I was starving so much. But I could tell right away its still not such a good idea quite yet. And yes that was made with teff and quinoa flour with some tapioca, yogurt and sunflower seeds. Really not bad at all. Nothing pre packaged, all ancient and real and no sugar--just stevia. But again it was made from those flours. And that for now is not so good for me or probably any celiac on a regular basis at least ideally.

Potatoes and vegies right now for me are so much better, even more so than usual--so you are right in that regard.

The acupuncturist says I need cooling foods for the time being. She also says she can help me be a little less reactive to CC. I wonder if that is true or not...I plan to see her again on Saturday. It is true I have to take it easy for now and slowly rebuild my energy. My long walk the other day with a new beau did not agree with me even though I had a great time and it was a gorgeous afternoon. I definitely am not even going to go into a restaurant for a while (except briefly maybe to meet someone) much less eat or drink anything there unless I bring my own stuff.

Meat and fish right now just do not agree. Nor do cooked dried beans. Even in my usual state beans for me are limited to maybe one pot a month, and I can't tolerate eating them with rice. I limit rice no matter what since I have noticed it soon doesn't agree with me.

Am I sensitive or what? yes. And I have been doing this no gluten for the most part for years. What is new is being without all the hidden glutens I didn't know about. I think having the hidden stuff made me less reactive, but by not having it I am overall stronger of limb etc. It is thus worth the effort even though the occasional glutenings are spectacularly harmful. I am a ceramic sculptor after all plus I like being able to swim, work on houses etc. And I don't want to lose my eyes due to developing cataracts or lose my memory, which does run in my family.

Somehow I need to strengthen my Chi in order to become more resilient. The acupuncture today really helped, I can tell already. I suppose I should incorporate some Tai Chi moves or something into my yoga routine...Or at least more deep breathing exercises.

Thanks again Ali, what you are saying is so absolutely right on overall. And yes it does apply to kids since after all this is what I have been dealing with--a system that should have been dealt with as a child but was instead ignored. Its a kind of warning perhaps to others... One can achieve relatively good health as I have overall but underlying there is a real weakness I always seem to struggle with and can't pretend isn't there.

Its much better to treat the child with this disease rather than ignore it and have the adult who has developed all kinds of weaknesses in the meanwhile.

[gabby]

Hi,

I find it is a good idea to keep a detailed food diary for a couple of weeks. Then you should be able to pinpoint where the possible contamination is happening, or if it is due to dairy, etc. (i.e. does it happen out of the house? in the house? when a certain friend is visiting? etc.) Then you can narrow down your search. You just never know what the problem could be. Is there a new pet in the house and the pet food has gluten in it? Is there a new rabbit at daycare with new food? Is there a new shampoo? New gluten-free snack? New person preparing food? Is your daughter eating and craving more dairy?, etc...

I know it is tedious...but a food diary really helps to narrow down the possible suspects. By the end of 2 weeks (and probably after just 3 days) you'll be able to go back through the diary and circle all the stuff that stands out.

Hope that helps!