14 replies to this topic

[ButterflyChaser]

Hi all, I am at a loss with this phenomenon and thought I would try this board for help - hopefully there are people here more knowledgeable about the effets of wheat than the average doctor is...

I have autoimmune thyroid disorders - Hashimoto AND Graves - and ever since then I have had weird reactions to wheat. Namely, my legs swell when I eat wheat in the recommend daily portions (the 6-10 healthy whole grains madness...). If I eat too much wheat, my legs swell. The weird thing is that it is especially the upper leg that swells (my thighs, especially up to where they almost join my runk). It is painful and my skin feels like it's going to explode. Now, I'd always blamed it on the times I was eating too many cookies, as a result of long nights studying - too much sugar et cetera, I told myself.

I have been on a gluten-free diet for almost two months, trying to be as careful as I can, though I think I did end up getting glutened by mistake three or four times. I am trying thus because it seems to help thyroid patients, when the disease is autoimmune in origin (there is a long history of autoimmune disease in my family). Now it so happened that I did end up having way too many gluten-free cookies on a couple of occasions, during this period. And well, my legs don't swell. What does this mean???

Thing is, they didn't find a wheat allergy. Blood test had antibodies too low (present in the negative range) and were negative again when I tested after going gluten-free. I did notice that since going gluten-free my brain is clearer, and my skin is, too; however, I have struggled a lot more in losing weight - my doctor tells me I need to lose about 20 lbs. It is curbing my too frequent bowel movements (probably because I consume less fiber, too?).

Why I didn't I get swollen frog effect from overconsumption of gluten-free grains, when none of my tests detected an intolerance? Has anyone here any idea on how to interpret that weird, and painful, swelling, since it seems like it's neither celiac nor allergy to wheat?

Thank you!

[GFinDC]

Hi,

Edema (swelling) is possible with any allergic reaction. It can happen in any part of the body. Face, hands legs, feet are all fair game. I used to have lots of swelling in my feet and ankles and some in my face. For me it was grapes, and several other things that caused it.

Not everyone who has celiac passes the celiac tests. It is possible to have it and have negative blood antibodies. It is also possible to have NCGI ( non-celiac gluten intolerance) which there are no tests for right now.

The best test is your own body. If the body reacts badly to eating gluten, then it is best not to eat gluten. Gluten is a protein found in all grains, but the kind in wheat, rye and barley and sometimes oats are a problem for celiacs.

[ButterflyChaser]

Dear GFinDC,
Thank you for your response. A non-celiac sensitivity would make sense to me. I am persevering with the elimination diet, and I do feel better when I stick to it to a T.

If someone has tested wil too low/negative antibodies in the past, should they be tested again after a few years, if the symptoms come up again? Alongside the swelling, if I eat wheat products like 3-4 times in a day I also get diarrhea, a lot of gas, and I get severe brain fog even with small quantities, fatigue for even a couple of days.

Mostly it is the autoimmunity inheritance that concerns me: my brother has scleroderma, aunt and grandma have arthritis, uncle has Chron's, my mum has vitiligo and as of now an "idiopathic" peripheral neuropathy, difficulty in coordination a=which sometimes involve speaking, and tingling, and everyone in her family seem to get sick (bloating, pain, gas, other GI issues) whenever they eat wheat. But no one is, that I know, celiac. On this note - should someone with an unexplicable neuropathy such as my mother's get tested, too?

[GFinDC]

Hi ButterflyChaser,

I don't know if you have seen this article about NCGI, but it is pretty newly identified in the study. Just for info. The call it non-celiac wheat sensitivity tho.

http://Non celiac wh...ists/Page1.html

People with celiac have a higher chance of getting other autoimmune diseases than other people do. Sometimes people go in for testing for arthritis or thyroid problems or something else and they end up finding celiac. Since there are autoimmune conditions are in your family, it makes sense to condier testing for the people with those conditions. It is important when testing for celiac to stay on gluten until all the testing is completed. After the testing is done (blood drawn, endocopy if doing one) going gluten-free right away is fine.

If one person in a family has celiac, the odds of someone else having it go way up. It is a genetic condition, so the genes can be passed. Having the genes doesn't mean you will automatically get celiac, but some people do.

Nueropathy is a possilbe symptom of celiac. Malabsorbtion of vitamins can cause problems with nerves. Celiac damages the villi that absorb vitamins, and especially the fat soluble vitamins, including A,E,D,K.. Also there is a condition called gluten ataxia where the brain is affected and walking is hampered. People with the nuero symptoms sometimes have fewer GI symptoms or slower onset of GI symptoms. That happens with people who have DH (Dermatitis Herpetiformis) also. DH is the skin rash associated with celiac.

Yes, I think it makes sense to get your mother tested. It can't hurt and it may make her life much more pleasant in the future. Since the celiac tests are not perfect though, it is worth while to try the gluten-free diet regardless of the test results. Also since the NCGI issues don't show up in celiac testing at all, there is no way to know if you have it except to go gluten-free for several months and see what happens.

My younger brother had Crohn's, and two of my uncles had colon cancer. My older sister has either celiac or NCGI, so she follows the gluten-free diet . These AI diseases fo run in families.

[ButterflyChaser]

Oh wow! Thanks - it's cool, but also sort of uncanny, that this study was done in my country!

I have just told my mum, and she is going to ask her GP for those tests; if a change in her diet cold help her feeling a bit better that would be very welcome indeed. She does not have DH, though, just a form of seborrheic dermatitis that's "dry," rather than oily. I have had the same condition too, for more time than I can remember: I form some tender, inflamed and itchy blotches that tend to evolve in dry scaling (I have to be careful when washing because if I rub too hard it bleeds). In my case it is mostly on my scalp, so that means that where it gets very inflamed I get small bald patches, which take years before growing hair again

I was not gluten-free when my first panel was run:
IgA 4 negatives: 0-19 weak positive 2-30 strong positive >30
IgG 5 negatives: 0-19 weak positive 2-30 strong positive >30
Antiendomisium - negative.
Antitransglutaminase: <2 negative:0-3 weak positive: 4-10 strong positive >10

I had been gluten-free for about three weeks when the second one was run, and in which everything was negative: IgA, IgG, Antitransglutaminase IgA and IgG, Antiendomisium. This was at a different lab (I am shuttling between the US and Italy), and my doctor in Italy is not sure that they are 100% precise because I was gluten-free, even if for a very short period, and ould like to repeat them at a later date when I have not been gluten-free for some time. Is this true, that even such a short period could make a difference? How long should I have been off gluten-free before testing? And would you still do an endo when all blood tests are negative?

[ButterflyChaser]

Ach, I forgot to add something!
What is driving my doc and my endo nuts is that I have been gaining weight precisely in the wrong circumstances.

I gained over 20 lbs in a week during the summer. It is not a joke. I got my thyroid panel done precisely during that week. I turned out to be HYPER, and not hypo. Wait, what?

I have often had (once a week on average, sometimes more) several bad episodes with diarrhea. They were definitely worse, almost invaludating (couldn't eat if I was going out et cetera) before going gluten-free. This week was actually the first week I haven't had anything like that. The weird thing is that every time I find myself having to run for the bathroom 10 or more times in a day I *gain* 5-6 lbs. ????

Does anybody have any idea why this might be happening? It is really strange for me - I have always been the kind of person that could eat a live cow and not put on weight.

The only speculation they have is that I may not be absorbing nutrients enough, and therefore my body is "stocking" everything I eat, especially since apparenly one can feel my bowels contracting and getting knotted up (figuratively), especially in the top right part of my lower tummy, which is a bit harder and tender at touching. Which are the tests to find out if I have an absorption problem?

[GFinDC]

Hi BC,

Gaining weight after a glutening can be from water retention/swelling. I'd consider an endoscopy with biopsy since you have GI symptoms. It may help identify something else, like H.Pylori or gastritis.

The tenderness could be a gallblader issue. which is not unusual with celiac. Do you have more symptoms when eating fatty/greasy foods?

Some people do gain weight with celiac, at least for a while. Eventually they would lose it if the damage and malabsobtion get more severe. But we don't all have the same sympoms or the same progression of symptoms. Our immune systems are not identical and our ability to heal damage is not identical. Some peolpe are IgA deficient for instance. And the duration that a person has celiac before being tested is another variable. And of course seeing we all have a different genes we have room for all sorts of variations in reality. Quite a few members here report having additional food intolerances beyond gluten. While there are some more common ones there are also some that are not common.

[ButterflyChaser]

Hi was tested (negative) for Pylori. But I do feel significantly worse with fatty foods.

[GFinDC]

Hmm, is the pain in the gall bladder area? If it is gall bladdder related pain, it may resolve after being on the gluten-free diet a while. Kimball's biolgy Pages has a diagram of the innards locations on the top right side. The gall bladder stores and releases bile. When greasy foods are eaten, it releases bile to help with their digestion. Your doctor can do a HIDA scan to test for gall bladder function. They can heal on their own sometimes with the gluten-free diet. Using pro-biotics and digestive enzyzmes can help. Also Betaine HCL.

Kimball's biolgy Pages
http://users.rcn.com....html#intestine

[ButterflyChaser]

Wow, that is interesting. The pain is a bit lower than the galbladder, I think. I have also noticed that, regardless of whether I am gluten-free or not, if I eat cheese or nuts, I get pale yellow lumps in my stool, like corn kernels, or a bit bigger, and lighter. I have no idea what it is. It didn't look like that, and when they tested me (they were searching for Candida, came out negative), they were not there, only "traces of undigested matter" or something like that.

I know that after my 3-6 month gluten-free trial my doctor wants me to go back to a NGF diet to redo the tests, because she is not sure my weren't false negatives because I had been gluten-free for a few weeks. How long should I be eating gliten for that to be a safe assessment?

[GFinDC]

Hi BC,

The length of time needed for a gluten challenge is variable depending on who you ask. Your doctor or GI will need to give you their idea of the correct length of time to eat gluten. The major celiac centers in the USA list various durations from 6 weeks up to 12 weeks. If you do have celaic disease doing a gluten challenge for 3 months can be a very unpleasnt experience. That's why we always tell people to not stop eating gluten until all the testing is complete. Going back on gluten for testing is not fun. And there is no guarantee you will competely recover from the challenge. Symptoms usually are worse for a celiac after they are gluten-free for awhile. Making yourself sick to please your doctor is kind of iffy in my book. They can find some other way to please themselves IMHO. As you can probably tellI I am not a fan of gluten challenges for testing.

The pain could be in your small intestine. The area near the stomach is called the duodenum. Sounds ilke the duodenum may be the ouchy spot.

[beachbirdie]

If your medical testing cannot bring you to any definite conclusions, I would suggest trying an anti-inflammation diet. Edema can be a physical response to inflammation, and inflammation can be caused by many more things than gluten. Some people are sensitive to ALL grains, starches (potato, etc.), sugars, dairy, some even can't take any nightshades (peppers, tomatoes, eggplants). Oh...many people who are hyperthyroid do find that they gain rather than lose weight.

Read Mark's Daily Apple for one good start.

I have lost 20 pounds now, since going on a grain-free nearly paleo diet. It has taken many months for the change. I started eating the paleo way in August, didn't lose a pound until October. But then the weight fell off FAST. I started at 180-185 (had been as high as 190 earlier this year) and am now firmly set at 165. I am female, 5 ft. 6 in. tall.

I HIGHLY recommend this diet. I feel so good! No more bloating, no more thyroid pain, no more swelling. My skin is better textured, people tell me my eyes are brighter. I no longer seem to have insomnia, I go to bed and actually fall asleep, and for the most part I stay asleep.

Hope you find a way to feel better soon.

[ButterflyChaser]

Hi GDinDC and BB,

Thank you for all your suggestions. I will debate with my doctor about the gluten challenge.

I think BB may also have a point, though. Nightshades seem all fine to me, but grains in general are not. I have had to give up quinoa because it once made me violently sick for about a day and a half. I have looked at the blog - I wonder if I could make it. My usual diet, ie unless I stress eat! , is pretty much close to primal, probably because I was brought up on an old-fashioned, peasant-type of diet.

My problems with primal would be that 1) I can't do heavy cream: the thought of cream in my coffee makes me gag. I am too used to the non-rich feel of skim milk, as weird as it is (I only had semi-skimmed as a child; whole milk was like a holiday treat. Go figure). I did manage to make myself unaddicted to cheese. I used to be unable to say no when offered. Not anymore. I spent about 2 months totally cheese free, and now even if I occasionally eat it, or even splurge in a soft cheese (goat, brie, quark) meal once a month, don't feel like "I can't say no." 2) Nuts are currently on my black list because they give me GI symptoms so those cannot work. Almonds, probably because of Hashi, make me feel like a zombie for two days. I don't even go close to peanuts. 3) On a day when I am good with my diet, I will eat like 3 crispbreads with my breakfast of fruit and yogurt, and no other starch, but it is very, very hard to get down to that level of grainlessness, and sometimes it backfires and makes me eat even more grains after a few days. Any ides on how to balance that, if I wanted to try primal? I also have relatively low blood sugar all the time. I am always around 70ish when fasting, and 80s after a meal, it gets to the 90s only when I have eaten way too much sugar. I have sometimes dipped in the 50s. Exercise seems to stabilize it. Bottom line: I have no idea how to interpret this data, whether going totally grainless would help, of if instead it would make it worse. Thoughts?

[GFinDC]

Hi BC,

Grainless may help, but you won't know if it helps you unless you try it. I did it for a while and didn't notice anything better myself. But I am not you and your body is not nessecarily going to react like mine. Other members have gone grain free and reported good results. Some have no improvement or change. It all "depends" as they say.

What are the crisps you eat? Crackers of some sort? Do they have soy (the gut killer) in them?

Have you tried a food diary with symptoms for each day? That may be helpful as you can track your reactions to different foods. It is easy to forget things after while. And some patterns may show up over a period of time, but not right a way. If you do a food diary, remember to list everything, including meds, vitamins and brand names, coffee, teas, all the stuff you consume.

I had many issues with multi-vitamins, so switched to mostly single vitamins or limited mixtures instead of the kitchen sink multivits. That way if you suspect one you can eliminate it for a while and continue to take the others. The same idea applies to foods. The more you can isolate a single component or food, the easier it is to identify a problem. Say you are looking at foods in the grocery store and one has 10 ingredients and the other has 1 to 3 ingredients, it is better to choose the one with 1 to 3 ingredients. There is less to figure out that way. Fewer possibilities equals less confusion. Divide (simplify) and conquer!

[ButterflyChaser]

Hi all, and thank you for your advice! I have spoken to my doctor today, who said a) that I have dysbiosis, and that it is connected to the high volume of antibiotics I took over the summer for an ear infection (note: my crazy weight gain, over 20 lbs in one week, also happened during that period); that my liver probably does not produce some hormone, and therefore what I have noticed are traces of undigested fat; and that 3) my intestinal vili are quite likely damaged even if it is not because of celiac disease.

The crispbreads I eat are either the Essential Fiber produced by Orgran, or the Chestnut ones by Le Pain de Fleurs - these are both soy free. Soy is my foe. I am taking a Vitamin B complex, and that seems to be fine. But I have never done that diary, so I wlll give it a go!